Aaron Boster MD Fascinating! I visited my GP several times before getting the MS diagnosis, mostly for episodes of confusion and falling for no reason. Then I seemed intolerant to many foods which I couldn’t pinpoint. Finally went to a gastroenterologist and dx’d with Gastroparesis. Gastro doc said it was likely due to demyelination of vagus nerve. MS doc said he’d never heard of it. Would love to see a video on how different specialists share case information and how they work together, because I’m not so sure they do!
Aaron Boster MD the only prodrome symptoms I can say I may have experienced were short bouts of vertigo (usually just a few hours a few times a year). Unfortunately, I never sought medical care for this because my vertigo always seemed to happen around the same time as my Mum had “Labyrinthitis”, so I just thought I was catching it from her. And I may have been. It might have just been a viral thing. It may have actually been THAT viral thing that triggered my MS. Or it may have been a prodrome symptom... Can’t say I had any of the other typical prodrome symptoms at all. What can I say? I’ve always been one to go against the grain 😂 Hindsight is a wonderful thing! I don’t think my doctors - as fabulous as they are - would have picked up on a prodrome in my case, as I barely noticed it myself and only visited the GP about 1 month before my first attack with a finger infection.
Interestingly enough, I had several of these symptoms 5 years prior to my 1st clinical attack. Sensory, bladder(infections), constipation, depression/anxiety and extreme fatigue. Thank you Dr. Boster for sharing this information with us. 😊
Tho I was 18 at diagnosis- so 5 years prior- my mom said- I was no different than other kids. My grandma had MS 40 years- she had prodromal symptoms prediagnosi- but was misdiagnosed as stroke for those years.
I’m so happy to hear this. I’ve been saying this to my husband for years. I had, in hindsight, prodromes. Except I’m am ER and dialysis RN, so absolutely refused to go to the hospital or doctor for things that aren’t life-threatening. 10 years before diagnosis I lost the feeling in my right arm for 24 hours. 8 years before diagnosis I lost the feeling in my face from my mouth, up. 5 years before diagnosis, I commented to a colleague that, for about a week, I kept veering to the left when I walked, often hitting walls and door frames. They said I was just weird, and we laughed. It eventually went away. 2 years prior to diagnosis, I couldn’t feel when I had to urinate, so had some accidents. I just thought it was being overtired and not being able to take a washroom break when working in ER. Plus, I had EBV as a teenager, and was a smoker for a few years. Now I’m RRMS and my symptoms are exactly as prodromes, except magnified. And I have had to retire. Which may have accounted for a short bout of therapy due to apparent “adjustment disorder”. 🤷♀️. Thanks for your video.
Hey Dr. B! Everyone at the clinic misses you and I can't wait to find out where you're going to practice next but for now I'm on the waitlist for the new Dr. Smith that's coming. Looking through my past there are things that make sense now that I've been diagnosed (2-19-19). 1. Urinary Frequency. I was always told I had a baby bladder. 2. In the past couple years or so, my mood has been so up and down. Almost manic. 3. I was exercising and working out about 5 days a week and slowly got to the point where I became almost paranoid that people were staring at me (not in a good way). 4. About 6 months before my first true attack, I woke up with a bone dry mouth. Couldn't eat any solids and liquids were difficult to swollow. Took 2 weeks before I could ingest any real food. I think this video is awesome. I agree with you. I think that we should start looking at the person and their symptoms, as a whole from the very start.
The Prodrome seems true for me. Thanks for sharing studies! Although, seems like mine proceeded 7 years leading up. Here it goes....2012- Bladder not emptying & Adenomyosis, led to hysterectomy, Fibromyalgia, Sleep study - PLMD & OSA, 2013 -IGG/IGA deficiency, Spilt tear in right foot for no reason with tendonosis led to Boot and PT, Rheumatologist- Negative Autoantibodies panel, but confirmed CVID, so I didn’t make enough autoantibodies to detect, 2014 - Gastrointestinal pain-IBS-D and high Crp, Went to Functional Doctor, which helped get diet, supplement regimen in place, Another Rheumtologist who suggested Sjogren’s - lip biopsy inconclusive. Treated by Chiropractor and Orthopedic doctor for spinal issues - MRI’s confirmed mild stenosis and hypertrophy, bone spurs. 2017 - Blurred vision - non occluded Narrow Angle Glaucoma/Blepharitis, Corneal Erosions. 2018 different Orthopedic surgeon visit due to continued pain and spasticity. He ordered MRIs, Cervical & Lumbar - Retrolisthesis, Stenosis, hypertrophy. 3 months PT, Stretching, some ROM improved and some not. Continued routine at home. Numbness & Tingling hands & feet - Biopsies confirmed Small Fiber Neuropathy. New Rheumatologist back to Fibromaylgia and Osteoarthritis diagnosis. Failed Prevnar 23 vaccine challenge, back to IVIG for CVID. End of 1018 shooting pains down right leg and fell twice. New lumbar MRI said mild compression l-3, but doctor said not causing shooting pain. Suggested SI joint injection and possible surgery. Continued elbow , wrist pain, numbness, tremors. I asked for another C-Spine MRi because I felt worse after PT. Cervical MRI T2 hyperintensities in C-Spine, Pons, Brain stem indicating demyelination. EMG/NCV normal. Brain MRI normal except for T-1 Hypointense left Cerebellar infarct or potential lesion. Nausea and Vertigo. Went to Gastroenterologist and normal Colonoscopy/Endoscopy. Weird skin color changes- Raynaud’s. Hematologist panel elevated Factor Viii and Von Willebrande factor- said it was Acute Phase Reactant. Went to Urgent care - vomiting/vertigo/nausea. Went to MS Neurologist and took more blood tests to rule out MS. Lumbar Puncture came back positive for greater than 5 OCB’s in CSF only. MRI Thoracic no lesions. Fatigue, depression, anxiety worse. Went to Psychiatrist and went on Vyvanse. I still have no diagnosis as I am considered complicated, but MS seems to be at top of the table. Asked for to a 3T magnet MRI, which showed cortical infarct on brain. On C-Spine no demyelination, but it was abnormal mild cord flattening C5 C6. They did not use StIR techniques, which was used to identify demyelination on 1.5T MRI. Neurosurgeon visit to see if that could be contributing to symptoms. The doctor did not believe it was- No surgery recommend. Foot pain, unable to bend right toe. Podiatrist thinks potential Tarsal Tunnel, but EMG/NCV normal. He recommends surgery. Referred to Cleveland Clinic by my MS and General Neurologist’s. I see Dr. Bermel at Cleveland Clinic next Thursday. In a nutshell, that’s my Prodrome.. If you lasted reading this long drama.😀
I remember thinking that every time I went to the doctor with symptoms, that I would leave with “nothing is wrong” with me, so I stopped going for any minor/weird complaints. I had intermittent numbness in my arms/hands, among other more minor things. I had frequent falls that got blamed on shoes (dansko clogs). When I got vertigo, it wasn’t as severe as my spouse’s, so I didn’t go to the doctor and took loratidine and occasionally one of his meclazines. I finally returned to doctor (ortho!) because my hands and one forearm was numb 24/7, along with constant feeling funnybone had been hit. I expected an ulnar nerve decompression. I also developed l’hermittes immediately prior to my EMG appt, which triggered that neurologist to order MRI... then lumbar puncture... then MS diagnosis.
I saw so many other doctors in the 5 years before my MS diagnosis. I was seeing my PCP very regularly. I saw a neurologist, a rheumatologist, a GI, a physical therapist, an ENT, an electro-cardiologist, a psychologist, a spinal doctor, and a podiatrist. I felt like a puzzle. I have several not unexpected co-morbid conditions, like low thyroid function and chronic migraine. For many of us, something was very very wrong years before we had our first "flare". I had a rheumatologist tell me that I "didn't have lupus yet" and while I don't have lupus at all (turns out it was MS) what he said kept my eyes open.
Happy to help & give u my MS patient insight. As I have had MS diagnosed since 1990. I had an irrelevant reason for an MRI when I was in HighSchool; I had a small lump/ base of my head but, it turned out to be nothing/cyst or such...however, MS lesions were found on my brain. That same year my optometrist found active optic neuritis! My prodrome's in hindsight were - most of my life I OFTEN had peripheral neuropathy! My hands&feet fell asleep VERY OFTEN & not always from sitting in awkward position. Burning, tingling in hand/feet very early on would be my biggest prodome as well as I've never had normal reflexes. Also, another possible prodome, for me: I have ALWAYS had VERY SENSITIVE FEET! I have literally never been able to just walk barefoot! As long as I can remember, even in my home w hardwood floors, even the tiniest bit of gravel or anything would set my bare feet off! And, this goes waaay back, lol!
5 years before my CIS. I had various and random pain in knees, wrists etc. Fatigue and migraines. Before those 5 years I used to regularly have uti's, issues with muscle spasms which lasted 2 years and again classic migraines. Today I have been diagnosed as ON and have one lesion on the right posterior of brain. So apparently I'm one brain lesion away from MS so just waiting for that yearly MRI. Thanks for all you do 🙂
I can't believe the coincidence. I am a health care clinician and a person with MS from British Columbia and I just read these articles yesterday going down a research rabbit hole from the commentary on the St Bart's MS blog related to the twin studies. I had mono at 21 and over the years I have had unexplained digestive issues, migraines, muscle pain and fatigue that were all labelled as related to depression and or stress. Then I had some big events but still no diagnosis. vertigo, partial paralysis, bladder issues. Finally got an MRI and Evoked Potentials for vesitibular nerve damage and then a diagnosis. Was about a 10 year process. So this information make sense.
When I was in my senior year of high school (17 years old), I had headaches every day for about 4 months. I went for an MRI but they didn't find anything that was abnormal. I remember them telling me that they couldn't find the cause and called it "idiopathic chronic headache (I think)." I remember them telling me to not rely on things like Tylenol or stuff like that to get relief, and them showing me booklets on how to live a life with chronic headaches. A month later the headaches just stopped and I haven't really had any headaches since then. Fast forward to almost a full year later, all hell broke loose right before my uni exams, and the MRI showed 25 brain lesions and 8 spinal lesions (cervical and thoracic).
Hi Dr B, I think this topic is so interesting. I absolutely agree that this info should be used to help evaluate possible MS. The main conditions I experienced pre-MS dx were ongoing and difficult to treat depression, urinary and bowel issues, and chronic pain. Looking back, I believe my MS started about 13 years before my dx. I am now in SPMS and I can only wish for others that physicians become more educated about MS and ways to dx and treat it earlier to help prevent disability. Great video👍😀
This information is of vital importance to me. (Struggling and declining in the Diagnostic Stage) Fighting to have symptoms acknowledged is exhausting. This information will help people in a huge way! Thank-you. I look forward to hearing about what people have experienced in their 5 years leading up to MS Diagnosis.
I was diagnosed aged 61, but I honestly think my prodrome lasted about 35 years. I wonder if it is a partly question of how alert the doctors are to the possibility of MS and also if the symptoms aren’t too hard to live with then it is a case of just getting on with it. So with slow progression the prodrome can go on for decades. In my country we don’t get treated until we get bad enough and then on the escalating model - for me after diagnosis there was no follow up. As a result it can be an isolating experience - as I think I once heard you say “ diagnose, Adios’ describes my experience. Your CZcams videos are spectacularly good, a great source of education and support., I always look forward to the next one. “Thank you” doesn’t quite cut the mustard, as for so many others I am extremely grateful to you!
I am a 63 yr old male, currently waiting for results from a lumbar puncture. My neurologist wants to rule out MS. During the last 20 yrs, I have suffered from chronic depression, crying spells and anxiety, being hospitalized 3 times. I received ECT treatments along with many trials of anti-depressants. During those years I experienced occasional pulsating muscle, spasms, usually in my arms. Also during those years I have suffered from irritable bowel syndrome. 5 years ago, the big event hit me. Lost the use of the muscles in my right leg for 3 weeks. After partially recovering from that, I lost the feeling in my left leg. I recovered partially from that in 2 weeks. After these episodes I have spasticity in both legs, chronic pain in my right ankle, chronic burning in my left foot and painful hamstrings. Constipation is a constant problem. I believe your idea is brilliant. It's like hearing little tremors before the earthquake hits. Your videos are extremely informative. You're a wonderful man for helping so many people. As they say, knowledge is power. Thank you, Wes.
In the 5 years prior to diagnosis I had increased fatigue & insomnia, constant headache, increased yeast infections, bladder infections, numbness& weakness in extremities & would randomly go away after a few months. Drs would blow it off. Honestly I was made to feel like I was crazy or wasting their time when I knew my body telling me something. Originally diagnosed with optic neuritis. 17 years rrms this year. Love your videos. So educational & fun 😊 thanks for your help! 🙏
I was sickly as a child. I had massive bowel issues from the start. I was given every laxative, stool softener, name it from as far back as I can remember. My first symptoms started in my mid 20s but I blew them off because they were just "weird" things that went away. I think you may be on to something. Keep going with it!
There is a paper from JAMA Neurology published last month, suggesting an increase in serum NfL levels 6 years before clinical onset of MS (not sure if you covered that one in the video). Paper title: "Serum Neurofilament Light Chain Levels in Patients With Presymptomatic Multiple Sclerosis" Bjornevik et al, 2019
Thanks Dr Boster for your continued passion to provide quality, non-patronising education in MS. My history showed lots of “obvious “ symptoms in the 30 years pre-diagnosis - yes 30 years - I just got better at hiding my symptoms over the years, as I got sick of being dismissed as hyperchondriac, lazy, etc. Earliest symptoms were extreme & debilitating fatigue (hard because I come from a very athletic family), heat intolerance, depression, panic attacks, vague blurry sight problems (I was taken to the family ophthalmologist as 12 years old who asked me why I was faking problems with my eyesight), severe gastric spasms for which I was hospitalised or for which I presented for emergency medical help (they couldn’t find anything, so I was given buscopan & pethidine & sent home). I only only finally diagnosed when my foot drop had me fall of treadmills twice & then fall into the arms of a customer (a pain specialist) who told me I better get it sorted. I spent years frequently visiting my PCP, gaining multiple prescriptions. I was always clumsy, walked into things & had dreadful balance. When I was well I over-compensated with extreme physical activity. Looking back, I can see with every undiagnosed relapse I would gain 10-20kgs, which I would then lose during my remitting times - I never dieted, it would just go up & down. Pregnancy was the best time for me. I felt so well & energetic with no fatigue. Only problem was, I had the relapse from hell after my son’s birth - I can remember very little of his first year. It is so easy to look back now & see the patterns. By the way, I was 53yrs at diagnosis (6 years ago).
I was in my 40s when I had my first MS symtoms which were optic pain, constipation, and MS hug. I am now 70. Neurologists say, “ we usually see MS in younger patients.” Now they just don’t know. Oh, by the way, my MS at 70 was diagnosed by my ear doctor on an MRI. He said I had severe MS lesions near the ventricles. I want to scream at doctors that I went to them when I was in my 40 and 50s but they didn’t treat me. I wish they had treated my MS when it first showed up, let alone a prodrome.
I had neurological symptoms come and go for 17 years before my diagnosis. First one was ringing in the ears which I still have today and they have just built up. MRI’s were done periodically during those 17 years but were clear until 2 years ago. That’s when I got an MRI because I had optic neuritis. It’s hard for me to understand why some people have symptoms far before getting mri evidence yet some have a head and spine full of lesions with no symptoms.
Yeah I’d like to know this too. I had an “episode” and brain MRI showed one tiny spot but neuro doesn’t seem worried and says spot is non specific. But I have so many sensory symptoms and leg spasms. He says my tiny spot doesn’t explain all my symptoms but I know I don’t feel right. He called it CIS, and isn’t treating me. I got a second opinion and that neurologist said the same thing. So I feel like a ticking time bomb and I’m scared. No one will help me.
Yes! Bladder, bowel, and fatigue all years prior to gait issues which finally led to diagnosis. I was told I had allergies (I don’t). I think I’ve had undiagnosed MS for about 20 years. I’ve been diagnosed and treated for about 4.5 years.
Great video! I definitely had a lot more Dr visits and hospital visits in the five years leading to my first symptom. From 23-27 I experienced GI issues with no found cause. Was on and off anti depressents, two kidney infections , damaged in both my ulnar Nevers and a vertigo episode. I thought I was crazy for a bit and even expected nothing to come from my MRI and spinal tap this year when I was numb from my chest down but for the first time in years something was found! It will be interesting to see others experiences!!
This video really got me. It’s the story of my life. I opened my CZcams page to document my ACDF surgery. The CZcams page was intended to share my journey with the surgery and my love for essential oils. But then I started having more health issues. More doctor visits. Then a “diagnosis” of Lyme disease followed with tests for MS. My doctor visits over the past years have gone from “arthritis” pain and low vitamin D, musculoskeletal issues, to spinal issues, to spinal surgery, to neurological issues, to a diagnosis of Lyme, to ocular migraines, tingling/numbness and more..... to discovering I have 10 brain lesions. Uughhh How ironic I opened the CZcams page and now can look back and see some of the progression from the past few years. So next step for me is another MRI now that we have a baseline to see if there is change. I am not “diagnosed” with MS but it’s not off the table either. My neurologist says if I have it, we have caught it early. So another MRI after the holidays to see what’s going on with my brain. 🧠
The prodrome describes me perfectly. Depression, bowel problems, lots of visits to the doctor and a few to the hospital all leading up to when I was diagnosed.
Yes I was treated previously for vertigo, irritable bowel syndrome. Fatigue. I think it would’ve been so easy for somebody to take a look into my brain via MRI many years ago instead of just giving me different medications for all of these problems. I think the cost of MRIs is truly ridiculous the machines have more than paid for themselves. Thanks
I have demyelination, but no MS dx. Speaking for myself, I retroactively noticed things that were quite striking prodromally. Fatigue and IBS really stand out! Fatigue really was a sudden onset symptom I did not understand at all. Prodromal appears to be “hindsight “. I have learned a lot from you, Dr. B. Thank you!
OMG Doc. I had 3 hospitalizations for severe depression beginning in 1984, official dx w/MS in 1990. I often say it was actually my first MS symptom!!!! It was a total personality change while I was a Junior in HS. My mom was not a fan of doctors, so if I'd be taken every time I asked, I would have had a file three inches thick. In college I was on a first-name basis with every employee in the Student Health Center at Otterbein (till my 1988 graduation, just before I had my first "attack.") I had UTI's (which I oddly seldom get anymore), but in college, I had them back to back every few months for about two years. One of them progressed to a kidney infection. Another weird thing; my right elbow was freezing cold for a solid 8 months when I was a Sophomore in College. Nothing - not the hottest water, the warmest heating pad - had any effect!!! It wasn't cold to the touch. It was cold "inside my head." I "knew" that, but my elbow STILL felt freezing. My 1st presentation in an ER for an "attack" was in 1988, when I had left-side paralysis, so an unusual presentation. It took a biopsy of what would doubtless be called CIS right now, bc I had one large spot on MRI - right, parietal, sitting on the ventricle, about the size & shape of a plum tomato (hence the biopsy.) During my Junior and Senior years in college, I was never not exhausted. Much of what you describe in your vid is very, very familiar. I can't really conceptualize, however, how compiling this info could help dx ppl in the future. The hardest part of my experience was that bc I had a hx of MMI, my physical complaints were dismissed as drama, malingering, and attention-seeking.
Dr Boster, this should be studied in depth. I’m retired Navy to include Desert Shield/Storm, former smoker, multiple vaccinations due to service to include anthrax x8 and grandmother who had MS. Began having GU issues in 2005-6. Had first indication of leg issues/clumsiness in 2010-11. Navy doctors diagnosed me with Sensory Ataxia. After I retired and found a good neurologist I was diagnosed with MS in 2014. He said the Navy had all the indicators to diagnose me in 2011.
6 years before diagnosis in 2008, i was pregnant. had severe vertigo (couldn't walk) and optic neuritis. i crawled around the house at 6 months because i couldn't stand. in the years following, in between quarterly 'attacks' of the triad (vertigo/optic neuritis/vomiting) i progressed to GI nuclear medicine and inconclusive exploratory surgery for severe GI symptoms. what finally led to my diagnosis was an ER trip for slurred speech and muscle weakness. i think my true prodrome, however, was left leg numbness that began in 1998. when my neurologist looked at my scans in 2008, he said i had had ms for at least 10 years.
Hi Dr. Boster, ms patient from Dayton Ohio here. Love your videos! I was just diagnosed this past December, and it explained a lot of what happened in the 5 years or so before I was diagnosed. I went from someone who hardly ever got sick to being sick and in my doctor's office quite frequently. I couldn't get through the day without a nap. But most significantly I developed severe anxiety which led into depression. I had never had either one before but the depression got so bad so fast I had to be hospitalized for my own safety. I was diagnosed when my left side went numb and I developed double vision. The mri showed the lesion causing those symptoms and there were some old lesions as well. Thanks for all of your hard work, I've learned so much from you! 🧡
I remember going to my family Practice dr every single month, complaining about the same issues all the time , dizziness, numbness and vertigo until he decided to send me to a neurologist and I was order to take an MRI ! That was 22 years ago . Luckily it was RRMS and I was prescribed Avonex until I hit SPMS .
Wow doc skipping down the retrospect lane. Oh well can only look to future street.So very glad to have discovered you last year. You are dead on accurate with the prodrome theory . Thankyou for your commitment 👍👍👍👍👍👍👍👍👍
Wow, this is fascinating. Started having lots of spinal cord issues probably about 5 years before my MS diagnosis. 2 or 3 years before my diagnosis, i developed a drop foot and numbness in both feet. I was in the middle of a seried of steroid injections in my back when i got the diagnosis. My pain management doctor said, "It all makes sense now!" He was treating the symptoms because back doctor had sent me to him after spend all of 5 minutes with me. I'm grateful for him and my neurologist. I also had depression that pre-dated my MS diagnosis. Looking back it totally makes sense and i am worried about my oldest daughter who just turned 21. She complains of back pains...i don't want her to have this horrible disease. I don't want anyone to have it.
My daughter got diagnosed with ms at the age of 19 with optical neuritis and slight shifting sensible disorder, all of which went away after some months. She had had obstipation for all her life, the pediatrician did not take that for serious. After her vaccination against fsme at the age of 8(?) she could not walk for one day, her legs were so weak. In retrospective she had signs of ms by the age of about 14, when she told us, the sight of one eye was less. The ophtalmologist could not find anything. This condition occured later on. From about 16 onwards about once a year 1 finger used to get numb for 2 or 3 weeks. At age 17 she suddenly felt weakness of her right side and fell down a staircase, following difficulties in handwriting, that could not be perceived from the outside. Later on she noticed that among her friends she was the only one who was not able to distinguish the different colours of a card game by dawn. Her father got juvenile arthritis as a boy of 8 jears and later on Morbus Bechterew. From my family came allergies and atypical parkinsons disease. Fortunately she is doing well under medication and keeps going to the neurologist and mri regularly. The mri shows many lesions, but she feels no impact so far. Another thing is that I am working with neurological patients as an OT. I have had some mostly heavily affected ms patients in my therapy. But denial of the idea that my only beloved daughter could be struck with this disease is extremely strong. I pushed the idea back very efficiently untill the optical neuritis occured. Thanks for your great channel !!!
This is pretty spot on for me. 7 years prior to diagnosis I was having GI symptoms that interfered with quality of life and daily activities. After lots of tests and scopes, the diagnosis was IBS. There had been years of therapy and antidepressants prior to that for anxiety and depression but it certainly increased around that time. After having mononucleosis, 14 years prior to diagnosis, intense fatigue and body aches were brushed off as lingering Epstein Barr symptoms. I reduced my work load and decided 70 hour weeks were no longer an option. Headaches became frequent. That numb and tingling left hand was dismissed as a pinched nerve by my pcp. I’m sure these providers thought I was a hypochondriac and they certainly made me feel like it. Looking back at all of the signs, I can’t help but feel bitter. I was a Caucasian female in my 20s with a strong family history of autoimmune diseases (mom). There were a lot of signs.
This is really interesting Aaron! I had severe fatigue during the 5 years before my first clinical attack, which I visited the Gp for. I also had a year of depression the year prior to my attack. Also painful to the touch skin, on and off, and a tremor in my hands, which I noticed getting worse during Uni, which I took propranolol for.
This! I have known this for myself for many years. Before I experienced a weekend of double vision that led to my MS dx, I had 2 seizures, a year or so of migraines, and I had floaties in my field of vision. I saw the head of the OSU dept. of neurology and had a bunch of tests. He said I didn't have epilepsy, and couldn't say the rest were related. Then a couple of years later, voila, MS. Thanks for tackling this!
I had bladder issues right on 5 years before my diagnosis. Seen a Urologist but he could not find anything wrong. He should have put 2 and 2 together but that’s the quality of health care we have here in the Canadian Military. Even seen an ophthalmologist during my first MS relapse when I had severe Optic Neuritis, not finding anything and giving me saline eye drops. I’m blind Doctor! Glad I got real medical attention after leaving the Army. Diagnosed in Ottawa by Dr. Freeman in 2012 and now followed by Dr. Richard Leckey in Halifax. Finished second round of Lemtrada. Doing great!
5 years before, depression, random attacks of Aura headaches, eyesight went thought it was due to aging, random real back pains, would attribute to sciatica from car accident, would be debilitating for days and then days later just vanish, clumsily walking, and then the icing on the cake went ice skating and was used to gliding, the right leg was fine, but the left leg was uncontrollably clumbsy...just thought it was because i hadn't skated in a while..yet no one believed me...😮😫😖☹ glad i found your channel...you make it so easy to understand..thank you..it's now years later, diagnosed with PPMS and so TY..for making me understand my disease...
I went to my GP with both bowel and bladder problems in the lead up to my diagnosis....and a few other things that with the benefit of hindsight were obviously neurological. I absolutely believe there is a prodrome and hopefully this research will become more widely known leading to earlier diagnosis.
Exciting progress being made in early identification! I've had IBD (UC) for 24 years that has been very well controlled. That said, I did have a flare in the 5-6 years prior to my MS dx. Of note, I've only had 2 or 3 flares total in the 24 year period since UC dx.
This is fascinating-I have been diagnosed with MS, but the 5 years preceding my diagnosis I was seen by my dr for depression, vertigo, waking bladder, muscular skeletal issues, and bowel issues, and was sent to a specialist for the bowel concerns. Interesting that most of these are considered a pro drone in your video. Would be great info for doctors to think outside the box when women my age start complaining of multiple symptoms suddenly.
First symptom: 1987 Optic neuritis Second occurrence: 2002 Fatigue, inability to lift my arms, gait disturbance, depression, falls In between, bowel and bladder issues, depression, pain in arms and legs, dizziness, four heart attacks, early onset menopause. Dx with seronegative RA. Lots and lots of doctor visits; I was consistently told for 20 years that I needed to exercise and lose weight. Dx: 2018 - optic neuritis with four active lesions on my frontal lobe.
Idiopathic itching and idiopathic vomiting and heat sensitivity. Starting at age 14 yo with a clinically isolated event at 17. A return of idiopathic vomiting at age 28 with a diagnosis of MS at age 30. As I’m not Canadian I didn’t have much access to health care. Although at the time of my official diagnosis the neurologist at Sheppard Center could see the evidence of the previous attack at 17.
I’m undiagnosed. I don’t see my neurologist for the first time until the 5th of next month. But I really started having symptoms this spring. My ophthalmologist is the first person to suggest MS which at the time made more sense than just REALLY strange migraines, like what we originally thought. But at the time I hadn’t had any numbness, he kept asking. It started a week later and has been almost daily since then. But to answer the prodrome question. I have had suffered from depression for 15 years. Or at least that when I was diagnosed and at that time I was actually suicidal. It got better it never went away. 2018 started with some very very stressful situations. My felt my depression grow almost immediately and I knew it was going to completely consume me if I didn’t get on medication and see someone right away. It’s under control and once again just background noise. But as my 26th birthday approaches in the next couple days, I would love to one day live life without that particular monster haunting me just waiting in the shadows waiting to pounce.
5 years before my MS diagnosis 1. Lost 2 close relatives (1 to a road accident & 1 to heart attack) 2. Used to walk 8 Kms a day (Was in Europe, walking is natural in good weather) 3. Had 2 falls from 1 while walking & 1 from riding Motorbike (leg fracture), the cause is not known 4. Finally, got tired to walk quickly, GP diagnosed Diabetes, when tremors persisted - History
My complaints started kind of out of the blue. A small brainstem lesion was causing 'paroxysmal' symptoms. Every few minutes, for about ten seconds, the right side of my face would feel icy cold as if I was pressing it to a cold window, at the same time, I had problems to coordinate my left arm and left leg. I can imagine that since this 'attack' took place in such an important spot it might have been the first. It happened to me during a period of intense stress. Aaron, without having read the papers, I was wondering how much of an outlier these prodromes are. I mean could you tell prospectively that something is going on with these patients, or is that only statistically visible through large scale retrospective group analysis?
Yes yes and yes. I had several instances of being active seeking doctors for help with depression. I kept my bladder issues to myself but the five years before being diagnosed were pretty significant for bladder accidents. Also frequently falling which resulted in CT scans and finally an MRI first on the thoracic spine and then the cervical spine. And then a referral to a neurologist and well you know the rest. Brain MRI, spinal tap and they found it!
8 years before MS diagnosis - DVT and bilateral PE, clotting disorder dx. 5 years before: emotional lability, depression and anxiety, have had GI issues since a kid
I have not been diagnosed but in the process of being tested. I've actually thought in the past that I'm going crazy. I've had so many visits to the doctor over the years for so many things. I've been seen multiple times for vertigo, UTIs, anxiety, bowel problems -had colonoscopy and endoscopy and ultimately diagnosed with IBS, pelvic/back pain-which I thought was related to gynecological issues, etc. I've been given medications for vertigo, UTIs and anti spasmatics for IBS. I always felt my body was on a constant mission to fall apart and each system took it's turn driving me crazy. I live a healthy lifestyle and I run. I'm always working toward doing everything I can to feel good and my body is revolting. I've joked to my family that I'm just going to take up smoking and drinking because what's the point. LOL. Well, anyway, we'll see soon what my neurologist has to say later this month.
I have been recently diagnosed with ms 8-16-2019. The neurologist i am seeing is still unsure of which form of ms i have and she would like to keep an eye on me. She states either ppms or rrms. My symptoms over the last 5 years have been Severe fatigue, off balance..disequilibrium, numbness and tingling off and on but only have of my foot, nausea a lot of the time, depression and panic attacks . I think my symptoms started way back in my mid twenties. Back in my mid twenties i was having problems with numbness and tingling arms and hands, severe migraine headaches, insomnia, near syncope episodes and i was diagnosed with depression and panic disorder and i was never tested for ms as the doctor at that time said i had severe depression and panic disorder and put me on anti depressants and benzodiazepines for off balance and panic.
I think looking into prodrome is a great idea. When I was diagnosed in 2014, I had lots of scarring from previous attacks yet MS wasn't even mentioned to me as a possibility until 6 months before my diagnosis. If there was a way for the family doctors, on the front lines, to easily see MS as a possibility without feeling like they see a MS ghost behind every corner, that would be great!
5 years before my diagnosis I was running a 10 K I n one of our midsummer events when at the last mile I started staggering badly. A fellow runner suggested I try to walk it off and cool off which I did and was able to finish the race. Little did I know, I was experiencing the very first signs of ataxia and heat intolerance. Also Aaron, I just found out 2 days ago that the city I live in Syracuse ,NY has the highest ms cases in the US. Wonder how that happened?
I had anxiety, headaches and vertigo the years before the diagnose. I think indentify the prodromes could be very helpful for an early diagnose and treatment, but not all the people with CIS finally develop MS so there are risks treating people before developing the illness, isn't it? Thanks for all your videos and explanations! I learn a lot with you!
Learned a new word. Felt basically healthy. Had hysterectomy for fibroids, possibly +5y b4. Thyroid irradiated for long time hyperthyroidism?. Not really what you mentioned.
Great idea Dr. B !!! Data provided (such as the Canadian models mentioned in this video ) would be very beneficial in ms diagnosis' and potential case similarities, however in my opinion, it would be awesome if the data could cover ten years rather than 5. Maybe a little far fetched, however since everyone has a different timeline of early signs and progression of symptoms, perhaps a decade of information could tell us more. I also believe that it would be cool to be able to diversify things such as lifestyles, demographics, immunizations, prior illnesses, social habits....and more. My early signs where about 8 years prior to diagnosis ( by you) ;) signs for me where optic neuritis, a severe case of vertigo ( hospitalized a day with no answer) , lower limb weakness (unexplained) I obviously had no clue as to what was going on until I was diagnosed....then these unexplained early signs started making sense. Imagine how many individual cases with similarities presently exist (globally). And if they could be linked, grouped, tied together and catagorized ..... Whoaaa.... the possibilities!!! Thank you again Dr B, for your dedication and time in the MS world!!!! You are adored and appreciated by so many of us !!!!!
I got my diagnosis in 2015 (november the day after my 36 th birthday🍨) due to an optic nevritis where i almost got completly blind. I had a few symptomes in the years leading to the diagnosis though. From i was 19 i had between 4-7 uti s a year. From 23-27 i had migranes a couple of days a month. In 2009 it startes one morning with vertigo, i was so dizzy, i crashed into the wall and fell down. (didnt go to the doctor) at the same time my left hand shook in the morning, i thought it was because of my bloodsugar and not have been eating breakfast yet. It went away after a couple of weeks. In 2012 i had my last baby, and one morning i went to pick him up, he was about 6 weeks when i suddenly lost all strenght in my arms, back and legs. I now went to the doctor and was refered to an x-Ray to see if i had an prolapse in the back. I did not have an prolapse, so the doctor told me i had weak core muscles after my pregnancy, and i was refered to a fysiotheraphist, so that i couls exercise my muscles. I finaly got my strenght again after 8 months. Between then and my diagnosis, i lost my Brother the year before my diagnosis and was experiencing a lot of fatigue, sensory issues and finaly the opticus nevritis wich led to my diagnosis! My MRI showed that i had over 10 lesions both in my brain and spinal cord at that time. If i would have gone to the doctor more often, maybe it would have been detected earlier 🤨
Mine was inability to judge distance the year before pain overtook everything, fatigue. The year before diagnosis, the pain didn't go away no matter what is done and I had a half blind right eye (literally half black sight). Doctor's visits were so common for me and I was working 400km away from hometown. Incontinence is a new norm then. What clued me was the positive Babinski that I learned about in university on brain and psychology. So when I was diagnosed, my history and the classic MS MRI findings, I finally knew what was wrong with me. This just speaks up to me closely. Glad this is discussed. By the way, I had my first depression at age 14 - that's 12 years before diagnosis.
I had so many "weird" things happen prior to my diagnosis that I too, like many others here, stopped going to the doctor. There was no obvious explanation, and I had no idea what was going on. Looking back, I don't know why I just lived with them, they were awful. I live in Saskatoon and have one of the best doctors there is now, and just started Ocrevus. So thankful for all you do.
I do recall leading up to the ms diagnosis two times a year apart having numbness on my right side. Also for probably a year the only way my bowl would work is if I used a laxative.
Excellent health here until about 7 years before PPMS diagnosis when prodromes started: GI, G/U, episode of vertigo, increased fatigue with routine exercise, 1 weird neuro sensation episode which felt like warm water being poured on my legs. Treated symtomatically or not at all.
Things went differently in my case: in the 5 years before the first attack (attack at age 22), I was enjoying young life, my cognition was significantly higher compared to general population, no health issues (besides vertigo due to dehydration, as I did not know about the necessity to hydrate regularly). The world around me was perfect :-) BUT, looking at myself being around 7 years old (some 15 years before the first attack), that is a different story. I had psoriasis. Also rather suddenly, it became uneasy/impossible for me to digest fatty food (e.g. bacon). The psoriasis disappeared after a few years forever, but the weakened digestion was permanent. Oh yeah, also my brain stopped receiving information about my stomach being full already.
I really do not have any memory of pre-diagnosis symptoms. I was diagnosed at 35. My first symptom was muffled hearing that turned into static on a Sunday. Optic Neuritis hit on Wednesday. I had an MRI on Thursday and was told on Friday that I had MS. Confirmed the next week by a Neurologist. My MS specialist said he can guarantee me that I've had it since my early 20's and most likely before then. Emotional-decision process and such may be the only symptoms I had prior to the onset of severe symptoms that led to diagnosis other than poor vision. I have a 17 year old daughter that I fear may have an MS diagnosis in her future & my oldest daughter has severe RA.
Good afternoon Dr Boster. Today I came to try to find a vídeo of your chanel that I vew and help me remember an exam I made I had to move atms, legs and eyes that I didn’t told to my Dr and didn’t new if him need to know now. And also walk for 25m left and right. I was falling a lot and my father died from ALS 35 years ago. I am not depressed with MS most tired and my leg that didn’t work well I can use it also. Not walking now but I can put. Up in my legs and I remember things I don’t remember for months and my mind is more clear. Thank you Dr Boster this help me a lot an push me to get better. My regards from Portugal 🇵🇹 🌹🥰🌹❣️🤗🥨 And I Stop smoking
For sure. The only problem was the symptoms came on really fast but yes new optic, bladder, fatigue, although there has been no study or even contact from the MS Society. So they would not have any information on my thought of that.
I went to every doctor imaginable. I had extreme, unexplainable fatigue and pain, gastrointestinal problems and chronic kidney and bladder issues. I had a hysterectomy, an appendectomy, my gallbladder out, had a tube placed in my ear, and saw a rheumatologist for FIVE years. I had my very first, five day migraine, couldn’t swallow and couldn’t urinate and my nurse practitioner ordered an MRI of my brain. The MRI led us to Mayo Clinic in Arizona which led to my much needed diagnosis. It has been a long road. I felt like no one would listen to me and I couldn’t even make it through a full work week without feeling like I had the flu.
I was dx at 25. Starting at 20, I had gi symptoms dx as IBD. I had heart issues a-fib (fixed RFA), I had sudden onset severe depression then anxiety, I had so many MD visits my family thought I was a hypochondriac. I'm now 61
It all started with a car accident in March 2018 Before that I had some very stressful life situations by losing family members, but I had no symptoms at all. I had no problems, I was very active in sports, motorcycling etc. Then everthing changed within 3 days after this accident. At least I got my diagnosis 5 weeks ago with PPMS. As physical therapist I know what to do, but it's hard. I am now 46.
I had bladder spasms for many years before my diagnosis. These kept me going to the bathroom multiple times a night. I never get a good nights sleep...
In the 5 yrs prior to diagnosis, so between 25-30, I suddenly developed extreme motion sickness and have been tired often. Back then, since I've always been very small, it was thought to be hypoglycemia. I'm thinking now it was both....
Hi from the UK My first symptom that I can recall was going to the bathroom to pee and just going to leave the bathroom and realising that I needed to go again ( not fully emptying bladder). Then I was getting mysterious bruises on my legs which were bad but I’d had no bumps so no reason for them. Doc did blood tests but nothing showed up. Then my balance started to fail me. Ice skating was much more difficult. Wearing heeled shoes and standing on one leg became difficult too. Eventually after about 3 years I went to the doctors and asked him if I might have M.S as my friend mum had it and I recognised my symptoms. He said ‘ well, it had crossed my mind. Within a fortnight I had been diagnosed after a myelogram lumber puncture. This was 1991 before MRI was commonly used and I believe then that doctors sat on the diagnosis for a few years as they thought knowing caused you unnecessary stress 😤 have been on Copaxone,Avonex, Tysabri and now Ocrevus.
In the 5 years before 1. Major Stress, illness in the family etc 2. Easily Broken bones and ligaments in feet 3. Bowel problems 4. Diagnosed with Urticaria (over sensitive skin whole body, tingling/crawling, welts) 5. Stomach pains/discomfort
It all started with sciatica followed by loss of balance. Difficulty climbing stairs loss of the ability to run with a drunk gait. Then horrible back pain and neuropathic pain in my feet. Along came frequent incontinence. The final straw was literally hugging walls to walk around my house. People literally gave me an arm to get in and out of the workplace. Then ... finally a diagnosed . A total of 6 yrs of debilitating symptoms before diagnosed 2012-2018.
My first experience with debilitating nerve pain was at the age of 6. It was under my left shoulder blade and caused my left arm to pull up (or draw up) behind my back for 12-14 hrs. My migraines began at the age of 11 and were not hormonal related. The migraines got worse and more frequent as I got older. I ran track in the 5th grade, but by the 7th grade I could no longer run. Everyone marked it up to the fibromatosis tumor excised from my left hip/thigh in 1975. That was also the general reason for the weakness in my left leg. I experienced numbness/tingling in my left hand in 2006. After an EMG, I was told not to rest my elbow on my desk. In 2007, an MRI showed multiple spots in brain, but the radiologist failed to mention them in his report. In 2008, my PCP told me that I was hyperventilating when I explained to her that I was numb around mouth and into my chin. I told her she needed to retire. I was without insurance until 2014, when I could return to proper medical care. I was finally diagnosed with Multiple Sclerosis on 4/26/2016 at the age of 50.
At age 45 I began to get digestive problems. At 50 I had a heart attack and colon cancer was found and colon removed. I had an apashia and numbness on whole right side. Had a bad vertigo 4 months ago and legs went weak. MRI and LP. Showed signs and diagnosis made. Father passed away in '68 from ms.
Hi Dr. Boster! As you know, I had optic neuritis undiagnosed until I saw you. I thought I was having an optic migraine, things just weren't as sharp I can't explain it. Only difference was it lasted a few weeks, maybe a month before my vision was ok again. I went to the eye doctor, they did not dilate my eyes so they could not see it. I was dilated when diagnosed with MS and they were then able to see the damage it had caused (so I wasn't crazy after all). I also had increased urinary frequency, I was unable to make it through the store without hitting the bathroom at least twice and I always needed to know where the bathroom was and in a hurry! I also had increased UTI's I had 4 within 6 months! Another big symptom I had was constipation, I did go to the doctor for this as it became very bothersome. I was recommended Miralax and to watch it. After "watching it" they then wanted to do a gallbladder ultrasound. Now, mind you I had no, zero gallbladder pain. I did it just to appease them, with normal results as expected. I was then told we would "watch it". I wasn't sure what we were "watching" for. So, I did not go back. My last symptoms were L'Hermittes sign, I also felt like I had something around my neck. After walking my legs would tingle and if I walked awhile my left foot would get lazy. Like if I had a flip flop on I couldn't keep it on because my foot would want to drag. I went back to the doctor, he just said "Hmmm thats weird" no treatment or test at that point, "we'll watch it". I was actually at an appointment with my daughter and she saw the NP. I mentioned it to her and she suggested I see a neurologist. I then told my mom (self diagnosing myself) I think I have MS, and I was then diagnosed with MS and sent to you. Prior to diagnosis I also had sexual dysfunction. I am an RN and with all these completely different symptoms I was beginning to think I was crazy. It was almost a relief when I was diagnosed. I hadn't been to a doctor in probably a couple years before I started going for these symptoms. I also had back pain that I thought was due to my matress, I bought a new matress that year. I had all of these symptoms in a 2 year time span before being diagnosed. I hope this helps and I hope your doing well. Thank you for all you do in this fight against MS to help people. I hope to one day be able to help as well.... I also had ventricular bigeminy that went on for weeks but I don't know if that was related. I still have frequent pvc's.
Hallo Aaron, very interesting thinkong! But I guess, most of us, whi were diagnosed with MS had GI issues, bowel and bladder problems, vision problems, maybe sensation loss or tingling sensations. MY story tarted in 2007 with a pneumonia, which kept me from working more than 3 months. I jsut returned to work when I had a biliary colic and was sent to the ER and had my gall bladder removed in a big surgery which kept me from working another two months. In beginning of 2008 I had a cataract in my left eye, but after the surgery I still had blurry vision and so my ophtomologist sent me to a neurologist who tested me and sent me back with the words "wait another two weeks and everything will be fine" I've had bowel problems for almost my whole life and after the birth of my two children in 1989 and 1992 I had to help me poop with my fingers almost every time, this didn't change to this very day. In 2010 my GI issues were intesne and I also had menstruation problems, like heavy bleeding with cramps and nausea and fainting sometimes. My gynecologist removed my uterus, which was filled with tumerous tissue (I can't explain it better) and after that I felt much better. I developed heavy migraines almost weekly and this kept me from working also. My chef was wonderful. He tried to understand. And he didn't"replace" me. Theheadaches kept on hurting me so bad that my primary care doctor sent me to a neurologist again. I saw several of those "frogs" who told me to go to the psychiatrist.... I don't get into that field any deeper.... well, then I came to this neurologist. She listened to my story and she admitted me to the neurological ward ASAP to check all those symptoms out. Which lead to the diagnosis of MS. I gueess so many of us have similar stories from around the globe. Nothing comes "out of nowhere" and so I am sure that earlier symptoms or illnesses can potentially be a prdrome for MS. Thanks for this interesting video! Thanks for taking your time for us! best regards from Germany, Britta P.S. if you find mistakeds, please keep them.........;)
Makes perfect sense. I’ve had all of the issues since the mid-90’s. Dx’d 3/26/2019. The incident that finally got the ball rolling was CT/MRI when my hand went numb. Thru all those years pain fatigue bladder/bowel burning itching tingling gait issues the whole works.
No, I don't. All I remember is optic neuritis in 2001, but no sign of ms on the mri. Next symptom about 10 yrs later, and ms on the mri. I wish I had been monitored and on a dmt right after optic neuritis.
Interesting video. I truly believe in this. Dx at age 45 however... EBV@15, Gastro problems starting at 18, Slight Heat intolerance and Bell’s palsy @28, deal with many migraines, EBV massive flare @30, heat intolerance, frequent urination, and lower back muscle spasm/spasticity@42+. Then transverse myelitis episode@45. Pins and needles/numbness toes to chest and obviously the whole rest of my ongoing symptoms :( On Copaxone for 3 years now. And now I’m concerned for my daughter(23) who has many of these prodromes 😧
Ok, I had one extreem symptom predating my first clinical MS attack at 14. I was 10 it was a school day and I lost the ability to walk entirely couldnt ambulate at all. I could stand in place with assistance but had no concept of locomotion for about 6 hours. It was like conceptually I new where my legs were and I could feel them but the big muscles were paralyzed. I thought it was just a slipped disk but it might have been a consequence of an early very small spinal lesion or an early lesion in the motor cortex. It resolved quicky and I was never seen in clinic. Though prior to being 10 I had several serious infections including a hospitalization for pneumonia several tick exposures and several ear infections and I had chickenpox days after recieving the live vaccine almost got bad enough to be hospitalized. So then MS at 14 and unlike most people that take 5 years to get a diagnosis my episode lasted 2 months and was bad enough to almost kill me. Since I was not an adult I resisted the MS diagnosis but was diagnosed fully at 17 but being much smarter than my parents in the realm of science I convinced them to let me do what I wanted.
The answer to your question is yes!! I was so fatigued prior to my first relapse. Thought it was because I was too chubby, lost 40 pounds, made no difference. Didn’t visit a doctor for it. Constipation also.
I had a whole whack of issues before diagnosis. Spasticity started in my teens, mental health issues. Gi issues. Period issues. Musculoskeletal issues. Fatigue (though as a kid I always needed more sleep also). Migraines. From my early teens. Docs and family believed I was "growing faster than normal" and that was the cause of my issues. Noone put two and two together. It left me in such a mess , knowing something wasn't right but noone would listen. "It's normal for young women to have period problems". Yet nothing shows up on scans. Then it became "it's all in your head, all in your head" they had no idea how right they were in the end. The reason they caught the ms. Nerve pain in my face, they thought it was TN. Although could have been linked to previous jaw surgery. By the time I saw the neurologist the same feeling covered my midriff thighs and down my left leg. (It continued to get worse and is still currently my largest disability, longest running relapse to date).
My story starts in 1975~ dxd with epilepsy (I was 5 years old). My life was changed by having to take medication for seizures, in 1984, I had my first attack of optic neuritis. In 1995, I had a grand mal seizure, neurologist just changed the dose of my medication and wasn’t looking for anything else. In 1998 I had a bout with vertigo, again no other issues that would warrant any further testing. Then in 2000, the grand mal seizures became more frequent and I was having trouble with my mobility, that’s when my new neurologist ordered a brain mri and a spinal tap….. and they found that I had MS.
Great video! First time I've heard the term "prodrome". I didn't have any GU symptoms BUT I did have a couple of events happen (4 years and 1 year) prior to diagnosis involving fast onset fever accompanied by severe chills that resolved within a couple of hours. No depression. Also had a symptom involving the throat and nasal passage. I was a ssxophonist in HS and later in the military, and I had a couple of instances where I couldn't blow the air from my lungs through my mouth and into my instrument without the air inadvertantly coming through my nasal passage. Like the muscles that divide the two became weak and couldn't keep that seal or separation. Again, this would resolve within a 24 hours.
I had psychiatric disorders from a young age. After a car accident in 2014, my hands went numb. I have since regained 80% sensation in my hands. I am now fully diagnosed with PPMS as of 2021 and am being treated with a DMT. Disability progressed quite a bit in the years between the first signs or prodromes, I only wish I had been diagnosed sooner.
Years before an initial "neurological event" (CIS?) over 20 years ago, I had chronic migraines, which continued until menopause, about 10 years ago. Following that event, for years, I had episodes of leg pain lasting for days at a time for which I consulted PCPs a few times with no resolution. I did consult my PCP for very minor bladder issue of urge incontinence with no resolution 2-3 years before the relapse. My first relapse, resulting in the MS diagnosis was about 3 years ago.
I had MS symptoms for 25 years before diagnosis. I had a severe head injury in 1989 - I have been told that the intercranial pressure I had kills 97% of those that have it. I was also told for years that my symptoms were "nerve damage" and it "may never heal 100%" and basically just "deal with it". I saw many different doctors and was treated like a hypochondriac. I finally saw one that ordered tests & was diagnosed 12/31/15. The numb right leg, herniated discs and an issue with one eye not reacting to light have been an issue since the head injury.
QOTD: Do you recall symptoms during the 5 years leading up to your first classic #MS attack?
Aaron Boster MD Fascinating! I visited my GP several times before getting the MS diagnosis, mostly for episodes of confusion and falling for no reason. Then I seemed intolerant to many foods which I couldn’t pinpoint. Finally went to a gastroenterologist and dx’d with Gastroparesis. Gastro doc said it was likely due to demyelination of vagus nerve. MS doc said he’d never heard of it. Would love to see a video on how different specialists share case information and how they work together, because I’m not so sure they do!
Aaron Boster MD the only prodrome symptoms I can say I may have experienced were short bouts of vertigo (usually just a few hours a few times a year). Unfortunately, I never sought medical care for this because my vertigo always seemed to happen around the same time as my Mum had “Labyrinthitis”, so I just thought I was catching it from her. And I may have been. It might have just been a viral thing. It may have actually been THAT viral thing that triggered my MS. Or it may have been a prodrome symptom... Can’t say I had any of the other typical prodrome symptoms at all. What can I say? I’ve always been one to go against the grain 😂 Hindsight is a wonderful thing! I don’t think my doctors - as fabulous as they are - would have picked up on a prodrome in my case, as I barely noticed it myself and only visited the GP about 1 month before my first attack with a finger infection.
Interestingly enough, I had several of these symptoms 5 years prior to my 1st clinical attack. Sensory, bladder(infections), constipation, depression/anxiety and extreme fatigue.
Thank you Dr. Boster for sharing this information with us. 😊
Aaron Boster MD just hit me with massive fatigue 6 months prior to my CIS.
Tho I was 18 at diagnosis- so 5 years prior- my mom said- I was no different than other kids. My grandma had MS 40 years- she had prodromal symptoms prediagnosi- but was misdiagnosed as stroke for those years.
I’m so happy to hear this. I’ve been saying this to my husband for years. I had, in hindsight, prodromes. Except I’m am ER and dialysis RN, so absolutely refused to go to the hospital or doctor for things that aren’t life-threatening. 10 years before diagnosis I lost the feeling in my right arm for 24 hours. 8 years before diagnosis I lost the feeling in my face from my mouth, up. 5 years before diagnosis, I commented to a colleague that, for about a week, I kept veering to the left when I walked, often hitting walls and door frames. They said I was just weird, and we laughed. It eventually went away. 2 years prior to diagnosis, I couldn’t feel when I had to urinate, so had some accidents. I just thought it was being overtired and not being able to take a washroom break when working in ER. Plus, I had EBV as a teenager, and was a smoker for a few years. Now I’m RRMS and my symptoms are exactly as prodromes, except magnified. And I have had to retire. Which may have accounted for a short bout of therapy due to apparent “adjustment disorder”. 🤷♀️. Thanks for your video.
Hey Dr. B! Everyone at the clinic misses you and I can't wait to find out where you're going to practice next but for now I'm on the waitlist for the new Dr. Smith that's coming.
Looking through my past there are things that make sense now that I've been diagnosed (2-19-19).
1. Urinary Frequency. I was always told I had a baby bladder.
2. In the past couple years or so, my mood has been so up and down. Almost manic.
3. I was exercising and working out about 5 days a week and slowly got to the point where I became almost paranoid that people were staring at me (not in a good way).
4. About 6 months before my first true attack, I woke up with a bone dry mouth. Couldn't eat any solids and liquids were difficult to swollow. Took 2 weeks before I could ingest any real food.
I think this video is awesome. I agree with you. I think that we should start looking at the person and their symptoms, as a whole from the very start.
Dr. Boster, are you coming to Michigan?
The Prodrome seems true for me. Thanks for sharing studies! Although, seems like mine proceeded 7 years leading up. Here it goes....2012- Bladder not emptying & Adenomyosis, led to hysterectomy, Fibromyalgia, Sleep study - PLMD & OSA, 2013 -IGG/IGA deficiency, Spilt tear in right foot for no reason with tendonosis led to Boot and PT, Rheumatologist- Negative Autoantibodies panel, but confirmed CVID, so I didn’t make enough autoantibodies to detect, 2014 - Gastrointestinal pain-IBS-D and high Crp, Went to Functional Doctor, which helped get diet, supplement regimen in place, Another Rheumtologist who suggested Sjogren’s - lip biopsy inconclusive. Treated by Chiropractor and Orthopedic doctor for spinal issues - MRI’s confirmed mild stenosis and hypertrophy, bone spurs. 2017 - Blurred vision - non occluded Narrow Angle Glaucoma/Blepharitis, Corneal Erosions. 2018 different Orthopedic surgeon visit due to continued pain and spasticity. He ordered MRIs, Cervical & Lumbar - Retrolisthesis, Stenosis, hypertrophy. 3 months PT, Stretching, some ROM improved and some not. Continued routine at home. Numbness & Tingling hands & feet - Biopsies confirmed Small Fiber Neuropathy. New Rheumatologist back to Fibromaylgia and Osteoarthritis diagnosis. Failed Prevnar 23 vaccine challenge, back to IVIG for CVID. End of 1018 shooting pains down right leg and fell twice. New lumbar MRI said mild compression l-3, but doctor said not causing shooting pain. Suggested SI joint injection and possible surgery. Continued elbow , wrist pain, numbness, tremors. I asked for another C-Spine MRi because I felt worse after PT. Cervical MRI T2 hyperintensities in C-Spine, Pons, Brain stem indicating demyelination. EMG/NCV normal. Brain MRI normal except for T-1 Hypointense left Cerebellar infarct or potential lesion. Nausea and Vertigo. Went to Gastroenterologist and normal Colonoscopy/Endoscopy. Weird skin color changes- Raynaud’s. Hematologist panel elevated Factor Viii and Von Willebrande factor- said it was Acute Phase Reactant. Went to Urgent care - vomiting/vertigo/nausea. Went to MS Neurologist and took more blood tests to rule out MS. Lumbar Puncture came back positive for greater than 5 OCB’s in CSF only. MRI Thoracic no lesions. Fatigue, depression, anxiety worse. Went to Psychiatrist and went on Vyvanse. I still have no diagnosis as I am considered complicated, but MS seems to be at top of the table. Asked for to a 3T magnet MRI, which showed cortical infarct on brain. On C-Spine no demyelination, but it was abnormal mild cord flattening C5 C6. They did not use StIR techniques, which was used to identify demyelination on 1.5T MRI. Neurosurgeon visit to see if that could be contributing to symptoms. The doctor did not believe it was- No surgery recommend. Foot pain, unable to bend right toe. Podiatrist thinks potential Tarsal Tunnel, but EMG/NCV normal. He recommends surgery. Referred to Cleveland Clinic by my MS and General Neurologist’s. I see Dr. Bermel at Cleveland Clinic next Thursday. In a nutshell, that’s my Prodrome.. If you lasted reading this long drama.😀
I remember thinking that every time I went to the doctor with symptoms, that I would leave with “nothing is wrong” with me, so I stopped going for any minor/weird complaints. I had intermittent numbness in my arms/hands, among other more minor things. I had frequent falls that got blamed on shoes (dansko clogs). When I got vertigo, it wasn’t as severe as my spouse’s, so I didn’t go to the doctor and took loratidine and occasionally one of his meclazines. I finally returned to doctor (ortho!) because my hands and one forearm was numb 24/7, along with constant feeling funnybone had been hit. I expected an ulnar nerve decompression. I also developed l’hermittes immediately prior to my EMG appt, which triggered that neurologist to order MRI... then lumbar puncture... then MS diagnosis.
I saw so many other doctors in the 5 years before my MS diagnosis. I was seeing my PCP very regularly. I saw a neurologist, a rheumatologist, a GI, a physical therapist, an ENT, an electro-cardiologist, a psychologist, a spinal doctor, and a podiatrist. I felt like a puzzle. I have several not unexpected co-morbid conditions, like low thyroid function and chronic migraine.
For many of us, something was very very wrong years before we had our first "flare". I had a rheumatologist tell me that I "didn't have lupus yet" and while I don't have lupus at all (turns out it was MS) what he said kept my eyes open.
Daphne White me too. I saw a rheumatologist about 10 years before and a psychiatrist one year before 🤪 I have an endocrinologist for hypo Thyroid
My heart goes out to you Daphne White!It is such a long exhausting road! Best wishes!
@@angelafield8607 I always say that living with MS is a balancing act, which feels ironic, since MS-ers have the worst balance.
Happy to help & give u my MS patient insight. As I have had MS diagnosed since 1990. I had an irrelevant reason for an MRI when I was in HighSchool; I had a small lump/ base of my head but, it turned out to be nothing/cyst or such...however, MS lesions were found on my brain. That same year my optometrist found active optic neuritis! My prodrome's in hindsight were - most of my life I OFTEN had peripheral neuropathy! My hands&feet fell asleep VERY OFTEN & not always from sitting in awkward position. Burning, tingling in hand/feet very early on would be my biggest prodome as well as I've never had normal reflexes. Also, another possible prodome, for me: I have ALWAYS had VERY SENSITIVE FEET! I have literally never been able to just walk barefoot! As long as I can remember, even in my home w hardwood floors, even the tiniest bit of gravel or anything would set my bare feet off! And, this goes waaay back, lol!
5 years before my CIS. I had various and random pain in knees, wrists etc. Fatigue and migraines. Before those 5 years I used to regularly have uti's, issues with muscle spasms which lasted 2 years and again classic migraines.
Today I have been diagnosed as ON and have one lesion on the right posterior of brain. So apparently I'm one brain lesion away from MS so just waiting for that yearly MRI. Thanks for all you do 🙂
I can't believe the coincidence. I am a health care clinician and a person with MS from British Columbia and I just read these articles yesterday going down a research rabbit hole from the commentary on the St Bart's MS blog related to the twin studies. I had mono at 21 and over the years I have had unexplained digestive issues, migraines, muscle pain and fatigue that were all labelled as related to depression and or stress. Then I had some big events but still no diagnosis. vertigo, partial paralysis, bladder issues. Finally got an MRI and Evoked Potentials for vesitibular nerve damage and then a diagnosis. Was about a 10 year process. So this information make sense.
When I was in my senior year of high school (17 years old), I had headaches every day for about 4 months. I went for an MRI but they didn't find anything that was abnormal. I remember them telling me that they couldn't find the cause and called it "idiopathic chronic headache (I think)." I remember them telling me to not rely on things like Tylenol or stuff like that to get relief, and them showing me booklets on how to live a life with chronic headaches. A month later the headaches just stopped and I haven't really had any headaches since then. Fast forward to almost a full year later, all hell broke loose right before my uni exams, and the MRI showed 25 brain lesions and 8 spinal lesions (cervical and thoracic).
Hi Dr B, I think this topic is so interesting. I absolutely agree that this info should be used to help evaluate possible MS. The main conditions I experienced pre-MS dx were ongoing and difficult to treat depression, urinary and bowel issues, and chronic pain. Looking back, I believe my MS started about 13 years before my dx. I am now in SPMS and I can only wish for others that physicians become more educated about MS and ways to dx and treat it earlier to help prevent disability. Great video👍😀
This information is of vital importance to me. (Struggling and declining in the Diagnostic Stage) Fighting to have symptoms acknowledged is exhausting. This information will help people in a huge way! Thank-you. I look forward to hearing about what people have experienced in their 5 years leading up to MS Diagnosis.
What symptoms?
I was diagnosed aged 61, but I honestly think my prodrome lasted about 35 years. I wonder if it is a partly question of how alert the doctors are to the possibility of MS and also if the symptoms aren’t too hard to live with then it is a case of just getting on with it. So with slow progression the prodrome can go on for decades.
In my country we don’t get treated until we get bad enough and then on the escalating model - for me after diagnosis there was no follow up. As a result it can be an isolating experience - as I think I once heard you say “ diagnose, Adios’ describes my experience. Your CZcams videos are spectacularly good, a great source of education and support., I always look forward to the next one. “Thank you” doesn’t quite cut the mustard, as for so many others I am extremely grateful to you!
I am a 63 yr old male, currently waiting for results from a lumbar puncture. My neurologist wants to rule out MS. During the last 20 yrs, I have suffered from chronic depression, crying spells and anxiety, being hospitalized 3 times. I received ECT treatments along with many trials of anti-depressants. During those years I experienced occasional pulsating muscle, spasms, usually in my arms. Also during those years I have suffered from irritable bowel syndrome. 5 years ago, the big event hit me. Lost the use of the muscles in my right leg for 3 weeks. After partially recovering from that, I lost the feeling in my left leg. I recovered partially from that in 2 weeks. After these episodes I have spasticity in both legs, chronic pain in my right ankle, chronic burning in my left foot and painful hamstrings. Constipation is a constant problem. I believe your idea is brilliant. It's like hearing little tremors before the earthquake hits. Your videos are extremely informative. You're a wonderful man for helping so many people. As they say, knowledge is power. Thank you, Wes.
In the 5 years prior to diagnosis I had increased fatigue & insomnia, constant headache, increased yeast infections, bladder infections, numbness& weakness in extremities & would randomly go away after a few months. Drs would blow it off. Honestly I was made to feel like I was crazy or wasting their time when I knew my body telling me something. Originally diagnosed with optic neuritis. 17 years rrms this year.
Love your videos. So educational & fun 😊 thanks for your help! 🙏
Michele Anderson yes made to feel like I was off my rocker!! Exactly... me too
I was sickly as a child. I had massive bowel issues from the start. I was given every laxative, stool softener, name it from as far back as I can remember. My first symptoms started in my mid 20s but I blew them off because they were just "weird" things that went away. I think you may be on to something. Keep going with it!
There is a paper from JAMA Neurology published last month, suggesting an increase in serum NfL levels 6 years before clinical onset of MS (not sure if you covered that one in the video). Paper title: "Serum Neurofilament Light Chain Levels in Patients With Presymptomatic Multiple Sclerosis" Bjornevik et al, 2019
Thanks Dr Boster for your continued passion to provide quality, non-patronising education in MS.
My history showed lots of “obvious “ symptoms in the 30 years pre-diagnosis - yes 30 years - I just got better at hiding my symptoms over the years, as I got sick of being dismissed as hyperchondriac, lazy, etc.
Earliest symptoms were extreme & debilitating fatigue (hard because I come from a very athletic family), heat intolerance, depression, panic attacks, vague blurry sight problems (I was taken to the family ophthalmologist as 12 years old who asked me why I was faking problems with my eyesight), severe gastric spasms for which I was hospitalised or for which I presented for emergency medical help (they couldn’t find anything, so I was given buscopan & pethidine & sent home). I only only finally diagnosed when my foot drop had me fall of treadmills twice & then fall into the arms of a customer (a pain specialist) who told me I better get it sorted. I spent years frequently visiting my PCP, gaining multiple prescriptions. I was always clumsy, walked into things & had dreadful balance.
When I was well I over-compensated with extreme physical activity. Looking back, I can see with every undiagnosed relapse I would gain 10-20kgs, which I would then lose during my remitting times - I never dieted, it would just go up & down.
Pregnancy was the best time for me. I felt so well & energetic with no fatigue. Only problem was, I had the relapse from hell after my son’s birth - I can remember very little of his first year.
It is so easy to look back now & see the patterns. By the way, I was 53yrs at diagnosis (6 years ago).
I was in my 40s when I had my first MS symtoms which were optic pain, constipation, and MS hug. I am now 70. Neurologists say, “ we usually see MS in younger patients.” Now they just don’t know. Oh, by the way, my MS at 70 was diagnosed by my ear doctor on an MRI. He said I had severe MS lesions near the ventricles. I want to scream at doctors that I went to them when I was in my 40 and 50s but they didn’t treat me. I wish they had treated my MS when it first showed up, let alone a prodrome.
This was a very thought provoking video, thanks for sharing this video and your thoughts.
I had neurological symptoms come and go for 17 years before my diagnosis. First one was ringing in the ears which I still have today and they have just built up. MRI’s were done periodically during those 17 years but were clear until 2 years ago. That’s when I got an MRI because I had optic neuritis. It’s hard for me to understand why some people have symptoms far before getting mri evidence yet some have a head and spine full of lesions with no symptoms.
Yeah I’d like to know this too. I had an “episode” and brain MRI showed one tiny spot but neuro doesn’t seem worried and says spot is non specific. But I have so many sensory symptoms and leg spasms. He says my tiny spot doesn’t explain all my symptoms but I know I don’t feel right. He called it CIS, and isn’t treating me. I got a second opinion and that neurologist said the same thing. So I feel like a ticking time bomb and I’m scared. No one will help me.
Yes! Bladder, bowel, and fatigue all years prior to gait issues which finally led to diagnosis. I was told I had allergies (I don’t). I think I’ve had undiagnosed MS for about 20 years. I’ve been diagnosed and treated for about 4.5 years.
Great video! I definitely had a lot more Dr visits and hospital visits in the five years leading to my first symptom. From 23-27 I experienced GI issues with no found cause. Was on and off anti depressents, two kidney infections , damaged in both my ulnar Nevers and a vertigo episode. I thought I was crazy for a bit and even expected nothing to come from my MRI and spinal tap this year when I was numb from my chest down but for the first time in years something was found! It will be interesting to see others experiences!!
This video really got me. It’s the story of my life. I opened my CZcams page to document my ACDF surgery. The CZcams page was intended to share my journey with the surgery and my love for essential oils. But then I started having more health issues. More doctor visits. Then a “diagnosis” of Lyme disease followed with tests for MS. My doctor visits over the past years have gone from “arthritis” pain and low vitamin D, musculoskeletal issues, to spinal issues, to spinal surgery, to neurological issues, to a diagnosis of Lyme, to ocular migraines, tingling/numbness and more.....
to discovering I have 10 brain lesions.
Uughhh
How ironic I opened the CZcams page and now can look back and see some of the progression from the past few years. So next step for me is another MRI now that we have a baseline to see if there is change. I am not “diagnosed” with MS but it’s not off the table either. My neurologist says if I have it, we have caught it early. So another MRI after the holidays to see what’s going on with my brain. 🧠
The prodrome describes me perfectly. Depression, bowel problems, lots of visits to the doctor and a few to the hospital all leading up to when I was diagnosed.
Yes I was treated previously for vertigo, irritable bowel syndrome. Fatigue. I think it would’ve been so easy for somebody to take a look into my brain via MRI many years ago instead of just giving me different medications for all of these problems. I think the cost of MRIs is truly ridiculous the machines have more than paid for themselves. Thanks
I have demyelination, but no MS dx. Speaking for myself, I retroactively noticed things that were quite striking prodromally. Fatigue and IBS really stand out! Fatigue really was a sudden onset symptom I did not understand at all. Prodromal appears to be “hindsight “. I have learned a lot from you, Dr. B. Thank you!
I often think that my MS dx is related my gut problems. Since very young I had many issues with my digestive system...😕
OMG Doc. I had 3 hospitalizations for severe depression beginning in 1984, official dx w/MS in 1990. I often say it was actually my first MS symptom!!!! It was a total personality change while I was a Junior in HS. My mom was not a fan of doctors, so if I'd be taken every time I asked, I would have had a file three inches thick. In college I was on a first-name basis with every employee in the Student Health Center at Otterbein (till my 1988 graduation, just before I had my first "attack.") I had UTI's (which I oddly seldom get anymore), but in college, I had them back to back every few months for about two years. One of them progressed to a kidney infection. Another weird thing; my right elbow was freezing cold for a solid 8 months when I was a Sophomore in College. Nothing - not the hottest water, the warmest heating pad - had any effect!!! It wasn't cold to the touch. It was cold "inside my head." I "knew" that, but my elbow STILL felt freezing. My 1st presentation in an ER for an "attack" was in 1988, when I had left-side paralysis, so an unusual presentation. It took a biopsy of what would doubtless be called CIS right now, bc I had one large spot on MRI - right, parietal, sitting on the ventricle, about the size & shape of a plum tomato (hence the biopsy.) During my Junior and Senior years in college, I was never not exhausted. Much of what you describe in your vid is very, very familiar. I can't really conceptualize, however, how compiling this info could help dx ppl in the future. The hardest part of my experience was that bc I had a hx of MMI, my physical complaints were dismissed as drama, malingering, and attention-seeking.
Dr Boster, this should be studied in depth. I’m retired Navy to include Desert Shield/Storm, former smoker, multiple vaccinations due to service to include anthrax x8 and grandmother who had MS. Began having GU issues in 2005-6. Had first indication of leg issues/clumsiness in 2010-11. Navy doctors diagnosed me with Sensory Ataxia. After I retired and found a good neurologist I was diagnosed with MS in 2014. He said the Navy had all the indicators to diagnose me in 2011.
6 years before diagnosis in 2008, i was pregnant. had severe vertigo (couldn't walk) and optic neuritis. i crawled around the house at 6 months because i couldn't stand.
in the years following, in between quarterly 'attacks' of the triad (vertigo/optic neuritis/vomiting) i progressed to GI nuclear medicine and inconclusive exploratory surgery for severe GI symptoms.
what finally led to my diagnosis was an ER trip for slurred speech and muscle weakness.
i think my true prodrome, however, was left leg numbness that began in 1998. when my neurologist looked at my scans in 2008, he said i had had ms for at least 10 years.
Hi Dr. Boster, ms patient from Dayton Ohio here. Love your videos! I was just diagnosed this past December, and it explained a lot of what happened in the 5 years or so before I was diagnosed. I went from someone who hardly ever got sick to being sick and in my doctor's office quite frequently. I couldn't get through the day without a nap. But most significantly I developed severe anxiety which led into depression. I had never had either one before but the depression got so bad so fast I had to be hospitalized for my own safety. I was diagnosed when my left side went numb and I developed double vision. The mri showed the lesion causing those symptoms and there were some old lesions as well. Thanks for all of your hard work, I've learned so much from you! 🧡
I remember going to my family Practice dr every single month, complaining about the same issues all the time , dizziness, numbness and vertigo until he decided to send me to a neurologist and I was order to take an MRI ! That was 22 years ago . Luckily it was RRMS and I was prescribed Avonex until I hit SPMS .
Wow doc skipping down the retrospect lane. Oh well can only look to future street.So very glad to have discovered you last year. You are dead on accurate with the prodrome theory . Thankyou for your commitment 👍👍👍👍👍👍👍👍👍
Wow, this is fascinating. Started having lots of spinal cord issues probably about 5 years before my MS diagnosis. 2 or 3 years before my diagnosis, i developed a drop foot and numbness in both feet. I was in the middle of a seried of steroid injections in my back when i got the diagnosis. My pain management doctor said, "It all makes sense now!" He was treating the symptoms because back doctor had sent me to him after spend all of 5 minutes with me. I'm grateful for him and my neurologist. I also had depression that pre-dated my MS diagnosis. Looking back it totally makes sense and i am worried about my oldest daughter who just turned 21. She complains of back pains...i don't want her to have this horrible disease. I don't want anyone to have it.
My daughter got diagnosed with ms at the age of 19 with optical neuritis and slight shifting sensible disorder, all of which went away after some months. She had had obstipation for all her life, the pediatrician did not take that for serious. After her vaccination against fsme at the age of 8(?) she could not walk for one day, her legs were so weak. In retrospective she had signs of ms by the age of about 14, when she told us, the sight of one eye was less. The ophtalmologist could not find anything. This condition occured later on. From about 16 onwards about once a year 1 finger used to get numb for 2 or 3 weeks. At age 17 she suddenly felt weakness of her right side and fell down a staircase, following difficulties in handwriting, that could not be perceived from the outside. Later on she noticed that among her friends she was the only one who was not able to distinguish the different colours of a card game by dawn.
Her father got juvenile arthritis as a boy of 8 jears and later on Morbus Bechterew. From my family came allergies and atypical parkinsons disease. Fortunately she is doing well under medication and keeps going to the neurologist and mri regularly. The mri shows many lesions, but she feels no impact so far.
Another thing is that I am working with neurological patients as an OT. I have had some mostly heavily affected ms patients in my therapy. But denial of the idea that my only beloved daughter could be struck with this disease is extremely strong. I pushed the idea back very efficiently untill the optical neuritis occured. Thanks for your great channel !!!
This is pretty spot on for me.
7 years prior to diagnosis I was having GI symptoms that interfered with quality of life and daily activities. After lots of tests and scopes, the diagnosis was IBS. There had been years of therapy and antidepressants prior to that for anxiety and depression but it certainly increased around that time.
After having mononucleosis, 14 years prior to diagnosis, intense fatigue and body aches were brushed off as lingering Epstein Barr symptoms. I reduced my work load and decided 70 hour weeks were no longer an option. Headaches became frequent. That numb and tingling left hand was dismissed as a pinched nerve by my pcp. I’m sure these providers thought I was a hypochondriac and they certainly made me feel like it.
Looking back at all of the signs, I can’t help but feel bitter. I was a Caucasian female in my 20s with a strong family history of autoimmune diseases (mom). There were a lot of signs.
This is really interesting Aaron! I had severe fatigue during the 5 years before my first clinical attack, which I visited the Gp for. I also had a year of depression the year prior to my attack. Also painful to the touch skin, on and off, and a tremor in my hands, which I noticed getting worse during Uni, which I took propranolol for.
This! I have known this for myself for many years. Before I experienced a weekend of double vision that led to my MS dx, I had 2 seizures, a year or so of migraines, and I had floaties in my field of vision. I saw the head of the OSU dept. of neurology and had a bunch of tests. He said I didn't have epilepsy, and couldn't say the rest were related. Then a couple of years later, voila, MS. Thanks for tackling this!
I had bladder issues right on 5 years before my diagnosis. Seen a Urologist but he could not find anything wrong. He should have put 2 and 2 together but that’s the quality of health care we have here in the Canadian Military. Even seen an ophthalmologist during my first MS relapse when I had severe Optic Neuritis, not finding anything and giving me saline eye drops. I’m blind Doctor! Glad I got real medical attention after leaving the Army. Diagnosed in Ottawa by Dr. Freeman in 2012 and now followed by Dr. Richard Leckey in Halifax. Finished second round of Lemtrada. Doing great!
5 years before, depression, random attacks of Aura headaches, eyesight went thought it was due to aging, random real back pains, would attribute to sciatica from car accident, would be debilitating for days and then days later just vanish, clumsily walking, and then the icing on the cake went ice skating and was used to gliding, the right leg was fine, but the left leg was uncontrollably clumbsy...just thought it was because i hadn't skated in a while..yet no one believed me...😮😫😖☹ glad i found your channel...you make it so easy to understand..thank you..it's now years later, diagnosed with PPMS and so TY..for making me understand my disease...
I went to my GP with both bowel and bladder problems in the lead up to my diagnosis....and a few other things that with the benefit of hindsight were obviously neurological. I absolutely believe there is a prodrome and hopefully this research will become more widely known leading to earlier diagnosis.
Exciting progress being made in early identification!
I've had IBD (UC) for 24 years that has been very well controlled. That said, I did have a flare in the 5-6 years prior to my MS dx. Of note, I've only had 2 or 3 flares total in the 24 year period since UC dx.
This is fascinating-I have been diagnosed with MS, but the 5 years preceding my diagnosis I was seen by my dr for depression, vertigo, waking bladder, muscular skeletal issues, and bowel issues, and was sent to a specialist for the bowel concerns. Interesting that most of these are considered a pro drone in your video. Would be great info for doctors to think outside the box when women my age start complaining of multiple symptoms suddenly.
First symptom: 1987
Optic neuritis
Second occurrence: 2002
Fatigue, inability to lift my arms, gait disturbance, depression, falls
In between, bowel and bladder issues, depression, pain in arms and legs, dizziness, four heart attacks, early onset menopause. Dx with seronegative RA. Lots and lots of doctor visits; I was consistently told for 20 years that I needed to exercise and lose weight.
Dx: 2018 - optic neuritis with four active lesions on my frontal lobe.
Hi Rob from uk I have musculoskeletal problems and ibs for years before my diagnosis. Hope that helps interesting show thanks
Idiopathic itching and idiopathic vomiting and heat sensitivity. Starting at age 14 yo with a clinically isolated event at 17. A return of idiopathic vomiting at age 28 with a diagnosis of MS at age 30. As I’m not Canadian I didn’t have much access to health care. Although at the time of my official diagnosis the neurologist at Sheppard Center could see the evidence of the previous attack at 17.
I’m undiagnosed. I don’t see my neurologist for the first time until the 5th of next month. But I really started having symptoms this spring. My ophthalmologist is the first person to suggest MS which at the time made more sense than just REALLY strange migraines, like what we originally thought. But at the time I hadn’t had any numbness, he kept asking. It started a week later and has been almost daily since then.
But to answer the prodrome question. I have had suffered from depression for 15 years. Or at least that when I was diagnosed and at that time I was actually suicidal. It got better it never went away. 2018 started with some very very stressful situations. My felt my depression grow almost immediately and I knew it was going to completely consume me if I didn’t get on medication and see someone right away. It’s under control and once again just background noise. But as my 26th birthday approaches in the next couple days, I would love to one day live life without that particular monster haunting me just waiting in the shadows waiting to pounce.
Dr. Boster, could you elaborate a little bit more on what the type of spinal cord compaints that were mentioned in the study?
5 years before my MS diagnosis
1. Lost 2 close relatives (1 to a road accident & 1 to heart attack)
2. Used to walk 8 Kms a day (Was in Europe, walking is natural in good weather)
3. Had 2 falls from 1 while walking & 1 from riding Motorbike (leg fracture), the cause is not known
4. Finally, got tired to walk quickly, GP diagnosed Diabetes, when tremors persisted - History
Raguraman B Thank you for sharing Raguraman!
My complaints started kind of out of the blue. A small brainstem lesion was causing 'paroxysmal' symptoms. Every few minutes, for about ten seconds, the right side of my face would feel icy cold as if I was pressing it to a cold window, at the same time, I had problems to coordinate my left arm and left leg.
I can imagine that since this 'attack' took place in such an important spot it might have been the first. It happened to me during a period of intense stress.
Aaron, without having read the papers, I was wondering how much of an outlier these prodromes are. I mean could you tell prospectively that something is going on with these patients, or is that only statistically visible through large scale retrospective group analysis?
Yes yes and yes. I had several instances of being active seeking doctors for help with depression. I kept my bladder issues to myself but the five years before being diagnosed were pretty significant for bladder accidents. Also frequently falling which resulted in CT scans and finally an MRI first on the thoracic spine and then the cervical spine. And then a referral to a neurologist and well you know the rest. Brain MRI, spinal tap and they found it!
8 years before MS diagnosis - DVT and bilateral PE, clotting disorder dx. 5 years before: emotional lability, depression and anxiety, have had GI issues since a kid
I have not been diagnosed but in the process of being tested. I've actually thought in the past that I'm going crazy. I've had so many visits to the doctor over the years for so many things. I've been seen multiple times for vertigo, UTIs, anxiety, bowel problems -had colonoscopy and endoscopy and ultimately diagnosed with IBS, pelvic/back pain-which I thought was related to gynecological issues, etc. I've been given medications for vertigo, UTIs and anti spasmatics for IBS. I always felt my body was on a constant mission to fall apart and each system took it's turn driving me crazy. I live a healthy lifestyle and I run. I'm always working toward doing everything I can to feel good and my body is revolting. I've joked to my family that I'm just going to take up smoking and drinking because what's the point. LOL. Well, anyway, we'll see soon what my neurologist has to say later this month.
I have been recently diagnosed with ms 8-16-2019. The neurologist i am seeing is still unsure of which form of ms i have and she would like to keep an eye on me. She states either ppms or rrms. My symptoms over the last 5 years have been Severe fatigue, off balance..disequilibrium, numbness and tingling off and on but only have of my foot, nausea a lot of the time, depression and panic attacks . I think my symptoms started way back in my mid twenties. Back in my mid twenties i was having problems with numbness and tingling arms and hands, severe migraine headaches, insomnia, near syncope episodes and i was diagnosed with depression and panic disorder and i was never tested for ms as the doctor at that time said i had severe depression and panic disorder and put me on anti depressants and benzodiazepines for off balance and panic.
I think looking into prodrome is a great idea. When I was diagnosed in 2014, I had lots of scarring from previous attacks yet MS wasn't even mentioned to me as a possibility until 6 months before my diagnosis. If there was a way for the family doctors, on the front lines, to easily see MS as a possibility without feeling like they see a MS ghost behind every corner, that would be great!
5 years before my diagnosis I was running a 10 K I n one of our midsummer events when at the last mile I started staggering badly. A fellow runner suggested I try to walk it off and cool off which I did and was able to finish the race. Little did I know, I was experiencing the very first signs of ataxia and heat intolerance. Also Aaron, I just found out 2 days ago that the city I live in Syracuse ,NY has the highest ms cases in the US. Wonder how that happened?
I had anxiety, headaches and vertigo the years before the diagnose.
I think indentify the prodromes could be very helpful for an early diagnose and treatment, but not all the people with CIS finally develop MS so there are risks treating people before developing the illness, isn't it?
Thanks for all your videos and explanations! I learn a lot with you!
Learned a new word. Felt basically healthy. Had hysterectomy for fibroids, possibly +5y b4. Thyroid irradiated for long time hyperthyroidism?. Not really what you mentioned.
Great idea Dr. B !!! Data provided (such as the Canadian models mentioned in this video ) would be very beneficial in ms diagnosis' and potential case similarities, however in my opinion, it would be awesome if the data could cover ten years rather than 5. Maybe a little far fetched, however since everyone has a different timeline of early signs and progression of symptoms, perhaps a decade of information could tell us more. I also believe that it would be cool to be able to diversify things such as lifestyles, demographics, immunizations, prior illnesses, social habits....and more.
My early signs where about 8 years prior to diagnosis ( by you) ;) signs for me where optic neuritis, a severe case of vertigo ( hospitalized a day with no answer) , lower limb weakness (unexplained) I obviously had no clue as to what was going on until I was diagnosed....then these unexplained early signs started making sense.
Imagine how many individual cases with similarities presently exist (globally). And if they could be linked, grouped, tied together and catagorized ..... Whoaaa.... the possibilities!!!
Thank you again Dr B, for your dedication and time in the MS world!!!! You are
adored and appreciated by so many of us !!!!!
I got my diagnosis in 2015 (november the day after my 36 th birthday🍨) due to an optic nevritis where i almost got completly blind.
I had a few symptomes in the years leading to the diagnosis though. From i was 19 i had between 4-7 uti s a year. From 23-27 i had migranes a couple of days a month. In 2009 it startes one morning with vertigo, i was so dizzy, i crashed into the wall and fell down. (didnt go to the doctor) at the same time my left hand shook in the morning, i thought it was because of my bloodsugar and not have been eating breakfast yet. It went away after a couple of weeks. In 2012 i had my last baby, and one morning i went to pick him up, he was about 6 weeks when i suddenly lost all strenght in my arms, back and legs. I now went to the doctor and was refered to an x-Ray to see if i had an prolapse in the back. I did not have an prolapse, so the doctor told me i had weak core muscles after my pregnancy, and i was refered to a fysiotheraphist, so that i couls exercise my muscles. I finaly got my strenght again after 8 months. Between then and my diagnosis, i lost my Brother the year before my diagnosis and was experiencing a lot of fatigue, sensory issues and finaly the opticus nevritis wich led to my diagnosis!
My MRI showed that i had over 10 lesions both in my brain and spinal cord at that time.
If i would have gone to the doctor more often, maybe it would have been detected earlier 🤨
Mine was inability to judge distance the year before pain overtook everything, fatigue. The year before diagnosis, the pain didn't go away no matter what is done and I had a half blind right eye (literally half black sight). Doctor's visits were so common for me and I was working 400km away from hometown. Incontinence is a new norm then. What clued me was the positive Babinski that I learned about in university on brain and psychology. So when I was diagnosed, my history and the classic MS MRI findings, I finally knew what was wrong with me. This just speaks up to me closely. Glad this is discussed. By the way, I had my first depression at age 14 - that's 12 years before diagnosis.
I had so many "weird" things happen prior to my diagnosis that I too, like many others here, stopped going to the doctor. There was no obvious explanation, and I had no idea what was going on. Looking back, I don't know why I just lived with them, they were awful. I live in Saskatoon and have one of the best doctors there is now, and just started Ocrevus. So thankful for all you do.
I do recall leading up to the ms diagnosis two times a year apart having numbness on my right side. Also for probably a year the only way my bowl would work is if I used a laxative.
Excellent health here until about 7 years before PPMS diagnosis when prodromes started: GI, G/U, episode of vertigo, increased fatigue with routine exercise, 1 weird neuro sensation episode which felt like warm water being poured on my legs. Treated symtomatically or not at all.
I had NO IDEA!!! When did you hear about this, Dr. Boster?
Things went differently in my case: in the 5 years before the first attack (attack at age 22), I was enjoying young life, my cognition was significantly higher compared to general population, no health issues (besides vertigo due to dehydration, as I did not know about the necessity to hydrate regularly). The world around me was perfect :-)
BUT, looking at myself being around 7 years old (some 15 years before the first attack), that is a different story. I had psoriasis. Also rather suddenly, it became uneasy/impossible for me to digest fatty food (e.g. bacon). The psoriasis disappeared after a few years forever, but the weakened digestion was permanent. Oh yeah, also my brain stopped receiving information about my stomach being full already.
I really do not have any memory of pre-diagnosis symptoms. I was diagnosed at 35. My first symptom was muffled hearing that turned into static on a Sunday. Optic Neuritis hit on Wednesday. I had an MRI on Thursday and was told on Friday that I had MS. Confirmed the next week by a Neurologist. My MS specialist said he can guarantee me that I've had it since my early 20's and most likely before then. Emotional-decision process and such may be the only symptoms I had prior to the onset of severe symptoms that led to diagnosis other than poor vision. I have a 17 year old daughter that I fear may have an MS diagnosis in her future & my oldest daughter has severe RA.
Good afternoon Dr Boster. Today I came to try to find a vídeo of your chanel that I vew and help me remember an exam I made I had to move atms, legs and eyes that I didn’t told to my Dr and didn’t new if him need to know now. And also walk for 25m left and right. I was falling a lot and my father died from ALS 35 years ago. I am not depressed with MS most tired and my leg that didn’t work well I can use it also. Not walking now but I can put. Up in my legs and I remember things I don’t remember for months and my mind is more clear. Thank you Dr Boster this help me a lot an push me to get better. My regards from Portugal 🇵🇹 🌹🥰🌹❣️🤗🥨 And I Stop smoking
In November second year with Mavenclad
For sure. The only problem was the symptoms came on really fast but yes new optic, bladder, fatigue, although there has been no study or even contact from the MS Society. So they would not have any information on my thought of that.
I went to every doctor imaginable. I had extreme, unexplainable fatigue and pain, gastrointestinal problems and chronic kidney and bladder issues. I had a hysterectomy, an appendectomy, my gallbladder out, had a tube placed in my ear, and saw a rheumatologist for FIVE years. I had my very first, five day migraine, couldn’t swallow and couldn’t urinate and my nurse practitioner ordered an MRI of my brain. The MRI led us to Mayo Clinic in Arizona which led to my much needed diagnosis. It has been a long road. I felt like no one would listen to me and I couldn’t even make it through a full work week without feeling like I had the flu.
I was dx at 25. Starting at 20, I had gi symptoms dx as IBD. I had heart issues a-fib (fixed RFA), I had sudden onset severe depression then anxiety, I had so many MD visits my family thought I was a hypochondriac. I'm now 61
It all started with a car accident in March 2018
Before that I had some very stressful life situations by losing family members, but I had no symptoms at all.
I had no problems, I was very active in sports, motorcycling etc.
Then everthing changed within 3 days after this accident.
At least I got my diagnosis 5 weeks ago with PPMS.
As physical therapist I know what to do, but it's hard.
I am now 46.
I had bladder spasms for many years before my diagnosis. These kept me going to the bathroom multiple times a night. I never get a good nights sleep...
In the 5 yrs prior to diagnosis, so between 25-30, I suddenly developed extreme motion sickness and have been tired often. Back then, since I've always been very small, it was thought to be hypoglycemia. I'm thinking now it was both....
My symptoms before I was diagnosed MS - Were fatigue,depression, lost of interest in sex, and frequently migraine
I had bad depression for years before diagnosis
Hi from the UK
My first symptom that I can recall was going to the bathroom to pee and just going to leave the bathroom and realising that I needed to go again ( not fully emptying bladder). Then I was getting mysterious bruises on my legs which were bad but I’d had no bumps so no reason for them. Doc did blood tests but nothing showed up. Then my balance started to fail me. Ice skating was much more difficult. Wearing heeled shoes and standing on one leg became difficult too. Eventually after about 3 years I went to the doctors and asked him if I might have M.S as my friend mum had it and I recognised my symptoms. He said ‘ well, it had crossed my mind. Within a fortnight I had been diagnosed after a myelogram lumber puncture. This was 1991 before MRI was commonly used and I believe then that doctors sat on the diagnosis for a few years as they thought knowing caused you unnecessary stress 😤 have been on Copaxone,Avonex, Tysabri and now Ocrevus.
I also had 2 significant events 5 tears before formal diagnosis. It was diagnosed as Hemiplegic Migraine.
In the 5 years before
1. Major Stress, illness in the family etc
2. Easily Broken bones and ligaments in feet
3. Bowel problems
4. Diagnosed with Urticaria (over sensitive skin whole body, tingling/crawling, welts)
5. Stomach pains/discomfort
It all started with sciatica followed by loss of balance. Difficulty climbing stairs loss of the ability to run with a drunk gait. Then horrible back pain and neuropathic pain in my feet. Along came frequent incontinence. The final straw was literally hugging walls to walk around my house. People literally gave me an arm to get in and out of the workplace. Then ... finally a diagnosed . A total of 6 yrs of debilitating symptoms before diagnosed 2012-2018.
I had rickets as a child so i absolutely had more dr’s visits and hospitalisations
My first experience with debilitating nerve pain was at the age of 6. It was under my left shoulder blade and caused my left arm to pull up (or draw up) behind my back for 12-14 hrs. My migraines began at the age of 11 and were not hormonal related. The migraines got worse and more frequent as I got older.
I ran track in the 5th grade, but by the 7th grade I could no longer run. Everyone marked it up to the fibromatosis tumor excised from my left hip/thigh in 1975. That was also the general reason for the weakness in my left leg.
I experienced numbness/tingling in my left hand in 2006. After an EMG, I was told not to rest my elbow on my desk. In 2007, an MRI showed multiple spots in brain, but the radiologist failed to mention them in his report. In 2008, my PCP told me that I was hyperventilating when I explained to her that I was numb around mouth and into my chin. I told her she needed to retire.
I was without insurance until 2014, when I could return to proper medical care. I was finally diagnosed with Multiple Sclerosis on 4/26/2016 at the age of 50.
definitely onto something, had many of the same symptoms five and six years prior to MS.
At age 45 I began to get digestive problems. At 50 I had a heart attack and colon cancer was found and colon removed. I had an apashia and numbness on whole right side. Had a bad vertigo 4 months ago and legs went weak. MRI and LP. Showed signs and diagnosis made. Father passed away in '68 from ms.
Hi Dr. Boster! As you know, I had optic neuritis undiagnosed until I saw you. I thought I was having an optic migraine, things just weren't as sharp I can't explain it. Only difference was it lasted a few weeks, maybe a month before my vision was ok again. I went to the eye doctor, they did not dilate my eyes so they could not see it. I was dilated when diagnosed with MS and they were then able to see the damage it had caused (so I wasn't crazy after all). I also had increased urinary frequency, I was unable to make it through the store without hitting the bathroom at least twice and I always needed to know where the bathroom was and in a hurry! I also had increased UTI's I had 4 within 6 months! Another big symptom I had was constipation, I did go to the doctor for this as it became very bothersome. I was recommended Miralax and to watch it. After "watching it" they then wanted to do a gallbladder ultrasound. Now, mind you I had no, zero gallbladder pain. I did it just to appease them, with normal results as expected. I was then told we would "watch it". I wasn't sure what we were "watching" for. So, I did not go back. My last symptoms were L'Hermittes sign, I also felt like I had something around my neck. After walking my legs would tingle and if I walked awhile my left foot would get lazy. Like if I had a flip flop on I couldn't keep it on because my foot would want to drag. I went back to the doctor, he just said "Hmmm thats weird" no treatment or test at that point, "we'll watch it". I was actually at an appointment with my daughter and she saw the NP. I mentioned it to her and she suggested I see a neurologist. I then told my mom (self diagnosing myself) I think I have MS, and I was then diagnosed with MS and sent to you. Prior to diagnosis I also had sexual dysfunction. I am an RN and with all these completely different symptoms I was beginning to think I was crazy. It was almost a relief when I was diagnosed. I hadn't been to a doctor in probably a couple years before I started going for these symptoms. I also had back pain that I thought was due to my matress, I bought a new matress that year. I had all of these symptoms in a 2 year time span before being diagnosed. I hope this helps and I hope your doing well. Thank you for all you do in this fight against MS to help people. I hope to one day be able to help as well.... I also had ventricular bigeminy that went on for weeks but I don't know if that was related. I still have frequent pvc's.
Hallo Aaron, very interesting thinkong! But I guess, most of us, whi were diagnosed with MS had GI issues, bowel and bladder problems, vision problems, maybe sensation loss or tingling sensations. MY story tarted in 2007 with a pneumonia, which kept me from working more than 3 months. I jsut returned to work when I had a biliary colic and was sent to the ER and had my gall bladder removed in a big surgery which kept me from working another two months. In beginning of 2008 I had a cataract in my left eye, but after the surgery I still had blurry vision and so my ophtomologist sent me to a neurologist who tested me and sent me back with the words "wait another two weeks and everything will be fine"
I've had bowel problems for almost my whole life and after the birth of my two children in 1989 and 1992 I had to help me poop with my fingers almost every time, this didn't change to this very day.
In 2010 my GI issues were intesne and I also had menstruation problems, like heavy bleeding with cramps and nausea and fainting sometimes.
My gynecologist removed my uterus, which was filled with tumerous tissue (I can't explain it better) and after that I felt much better.
I developed heavy migraines almost weekly and this kept me from working also. My chef was wonderful. He tried to understand. And he didn't"replace" me.
Theheadaches kept on hurting me so bad that my primary care doctor sent me to a neurologist again. I saw several of those "frogs" who told me to go to the psychiatrist....
I don't get into that field any deeper.... well, then I came to this neurologist. She listened to my story and she admitted me to the neurological ward ASAP to check all those symptoms out. Which lead to the diagnosis of MS.
I gueess so many of us have similar stories from around the globe. Nothing comes "out of nowhere" and so I am sure that earlier symptoms or illnesses can potentially be a prdrome for MS. Thanks for this interesting video! Thanks for taking your time for us! best regards from Germany, Britta
P.S. if you find mistakeds, please keep them.........;)
TY for sharing your story Britta! I hope you and yours are warm and well!
Makes perfect sense. I’ve had all of the issues since the mid-90’s. Dx’d 3/26/2019. The incident that finally got the ball rolling was CT/MRI when my hand went numb. Thru all those years pain fatigue bladder/bowel burning itching tingling gait issues the whole works.
Approaching age 49 I am still in the fight. Sorry for posting on this old video, but it caught my attention.....
Very interesting. The only symptom mentioned that i experienced was chronic constipation.
No, I don't. All I remember is optic neuritis in 2001, but no sign of ms on the mri. Next symptom about 10 yrs later, and ms on the mri. I wish I had been monitored and on a dmt right after optic neuritis.
Interesting video. I truly believe in this. Dx at age 45 however... EBV@15, Gastro problems starting at 18, Slight Heat intolerance and Bell’s palsy @28, deal with many migraines, EBV massive flare @30, heat intolerance, frequent urination, and lower back muscle spasm/spasticity@42+. Then transverse myelitis episode@45. Pins and needles/numbness toes to chest and obviously the whole rest of my ongoing symptoms :( On Copaxone for 3 years now.
And now I’m concerned for my daughter(23) who has many of these prodromes 😧
Ok, I had one extreem symptom predating my first clinical MS attack at 14. I was 10 it was a school day and I lost the ability to walk entirely couldnt ambulate at all. I could stand in place with assistance but had no concept of locomotion for about 6 hours. It was like conceptually I new where my legs were and I could feel them but the big muscles were paralyzed. I thought it was just a slipped disk but it might have been a consequence of an early very small spinal lesion or an early lesion in the motor cortex. It resolved quicky and I was never seen in clinic. Though prior to being 10 I had several serious infections including a hospitalization for pneumonia several tick exposures and several ear infections and I had chickenpox days after recieving the live vaccine almost got bad enough to be hospitalized. So then MS at 14 and unlike most people that take 5 years to get a diagnosis my episode lasted 2 months and was bad enough to almost kill me. Since I was not an adult I resisted the MS diagnosis but was diagnosed fully at 17 but being much smarter than my parents in the realm of science I convinced them to let me do what I wanted.
The answer to your question is yes!! I was so fatigued prior to my first relapse.
Thought it was because I was too chubby, lost 40 pounds, made no difference. Didn’t visit a doctor for it.
Constipation also.
I had a whole whack of issues before diagnosis. Spasticity started in my teens, mental health issues. Gi issues. Period issues. Musculoskeletal issues. Fatigue (though as a kid I always needed more sleep also). Migraines. From my early teens. Docs and family believed I was "growing faster than normal" and that was the cause of my issues.
Noone put two and two together. It left me in such a mess , knowing something wasn't right but noone would listen. "It's normal for young women to have period problems". Yet nothing shows up on scans. Then it became "it's all in your head, all in your head" they had no idea how right they were in the end.
The reason they caught the ms. Nerve pain in my face, they thought it was TN. Although could have been linked to previous jaw surgery. By the time I saw the neurologist the same feeling covered my midriff thighs and down my left leg. (It continued to get worse and is still currently my largest disability, longest running relapse to date).
My story starts in 1975~ dxd with epilepsy (I was 5 years old). My life was changed by having to take medication for seizures, in 1984, I had my first attack of optic neuritis. In 1995, I had a grand mal seizure, neurologist just changed the dose of my medication and wasn’t looking for anything else. In 1998 I had a bout with vertigo, again no other issues that would warrant any further testing. Then in 2000, the grand mal seizures became more frequent and I was having trouble with my mobility, that’s when my new neurologist ordered a brain mri and a spinal tap….. and they found that I had MS.
This describes exactly my backwards experiences
Great video! First time I've heard the term "prodrome". I didn't have any GU symptoms BUT I did have a couple of events happen (4 years and 1 year) prior to diagnosis involving fast onset fever accompanied by severe chills that resolved within a couple of hours. No depression. Also had a symptom involving the throat and nasal passage. I was a ssxophonist in HS and later in the military, and I had a couple of instances where I couldn't blow the air from my lungs through my mouth and into my instrument without the air inadvertantly coming through my nasal passage. Like the muscles that divide the two became weak and couldn't keep that seal or separation. Again, this would resolve within a 24 hours.
I had psychiatric disorders from a young age. After a car accident in 2014, my hands went numb. I have since regained 80% sensation in my hands. I am now fully diagnosed with PPMS as of 2021 and am being treated with a DMT. Disability progressed quite a bit in the years between the first signs or prodromes, I only wish I had been diagnosed sooner.
Years before an initial "neurological event" (CIS?) over 20 years ago, I had chronic migraines, which continued until menopause, about 10 years ago. Following that event, for years, I had episodes of leg pain lasting for days at a time for which I consulted PCPs a few times with no resolution. I did consult my PCP for very minor bladder issue of urge incontinence with no resolution 2-3 years before the relapse. My first relapse, resulting in the MS diagnosis was about 3 years ago.
I had MS symptoms for 25 years before diagnosis. I had a severe head injury in 1989 - I have been told that the intercranial pressure I had kills 97% of those that have it. I was also told for years that my symptoms were "nerve damage" and it "may never heal 100%" and basically just "deal with it". I saw many different doctors and was treated like a hypochondriac. I finally saw one that ordered tests & was diagnosed 12/31/15. The numb right leg, herniated discs and an issue with one eye not reacting to light have been an issue since the head injury.