In one brief 10 minute appointment I was diagnosed with Conversion Disorder, because the neurologist thought my arm weakness was fake. I actually have MS with brain and spine lesions and at the time of the appointment, I had Transverse Myelitis, with a large active lesion in my cervical spine. Unfortunately, it's very difficult to be taken seriously by medical professionals once this diagnosis is made, even if later found to be incorrect.
Yes, I was misdiagnosed in my early 30’s and finally was diagnosed in my early 50’s. Fifteen years later, I am still fighting the good fight with holistic and traditional medical protocol. I wish that all of us that have this disease find our miracle to live our best lives.
I have an easier time moving when I'm by myself too. I think that it's because anticipating the movements of others and coordinating around them is a heavier cognitive lift than moving by myself. Moving around others wears me out a lot faster than moving around by myself.
Fascinating. It's great she's publicising the condition and its hidden impacts. British male 57, diagnosed RRMS 1998. EDSS 4.5 so generally doing well. Had to retire early due to cognitive symptoms but enjoying retirement. You're doing a great job, doctor!
@@DrBrandonBeaberthank you so much for your explanation. By the way, I read about drugs to remyelinate as well as Pipe307 and Pipe 791 by Contineum Therapeutics, but only for the first one in joint venture with J&J. So, it's a big hope for everyone of us. PS I am waiting for Gold nanocrystals CNM-AU8....😊
@@DrBrandonBeaberthank you so much for everything. You are our source of hope and happiness. We glance over these bad days. Cant wait to see one of your videos regarding to gold nanocrystals CNM-AU8 by Clene. And even Contineum Therapeutics is developing pipe-307 in phase 2 (in joint venture with J&J) that allows remyelination. I cross the fingers...
Great to get an update in Selma. She was so sick when first came out. No news on her speech? That was quite a serious symptom. I have MS and went undiagnosed for well I’ve 10 years as I was being treated for spinal problem as well. when MRI first came into use I was finally able to get a difinative diagnosis. It’s been hard but I still appear well to outsiders. I was later diagnosed with EDS as well. What a coincidence. Consequently I easily injure too. Wrists in particular are often sprained as are shoulders. Swimming is my favourite exercise. Sometimes just didn’t in water is enough but i do try to turn it into an exercise workout if I’m able. Doing great for nearly 40 years since disgnosed so I feel fortunate. I do wish it was a different lottery that I’d won though lol
So glad to hear you're doing well after 40 yrs since Dx. My daughter had her first symptom age 18 yrs, Dx at 19, started a DMT right away, is 21, no symptoms and in nursing school. I feel enouraged when long-haulers such as yourself are brave enough to share and also report favorable outcomes.
Lifetime of symptoms...I get it. Just got MS diagnosis a week ago. I can definitely trace back symptoms to 29-30 years ago but always justified then because numbness and headaches were all legitimately blamed on having my neck broken a few years earlier. And if I look back to Jr. High school days, I definitely was having a lot of falls at school especially and one incident landed me at emergency getting 10 stitches across my knee. I have had many bad falls since then. Always clumsy, always dropping things. Always difficulty focusing and tuning out when people were talking...so many signs. Unfortunately when I took it to my family doctor a year ago when I lost my mobility and had new numbness and hallucinating cigarette smoke...I had 7 pages of symptoms to report and dates as to when they first began. That was just the tip of the iceberg....it is your videos along with Dr. Boster that really prepared me for this diagnosis and a few other MS Warriors. So the internet...isn't all bad 😊. (Tonia in Newfoundand, Canada 🇨🇦)
At age 49 I was diagnosed with RRMS in 2021 and it took FOREVER to get a diagnosis. It'ts nice to see these older actors and actresses bringing MS to the forefront. The archaic thinking that MS is typically for young people is what makes getting diagnosed often hard.
Thank you for your channel, it's good you are to the point and don't have a forgone conclusion of worsening health as what we need is hope and optimism. I was diagnosed 8 years ago and had HSCT done 18mths ago and still experiencing some mild progression but very grateful to have had this treatment done. It is always good to hear of new medication in the pipeline
Newly diagnosed after 14 years with PPMS. Worked hard trying to get stronger for years with no getting back to baseline. Chasing lower lumbar and other back problems during those years. Diagnosis for me is a blessing in that I now know why I can't seem to keep the small gains I get. Felt like I was going crazy. Left side affected. I finally have an answer! I can still walk althought it's very hard and my left side is most affected. I do butt kicking PT every day. Never give up. Keep on exercising! The mind blowing take-away from this video was when she stated that she walks worse when people are watching. I thought I was alone in this and it is also my experience. I even told a few close friends and they of course humor me. 😆 Will put ideas for future videos in another post. Thanks for the great work!
Selma Blair has helped raise a lot of awareness of MS. She's had a rough MS journey, I hope she's able to recover more over time. Similar to her, I feel that I may have had undiagnosed MS early in life as well. I didn't know she also has EDS. I have a cousin with Hasimodo's and EDS. Her EDS is the mild hyper flexibility type, but she does have chronic joint pain which was especially pronounced during her 3 pregnancies. Video suggestion: I recently read an article about an experimental CAR T-Cell therapy KYV-101. Can you post a video explaining that and how it differs from current B-cell therapies. I'm also curious about the future of BTKIs since the recent phase 3 failure of one of the candidates.
I definitely have had symptoms since my early teens, I always just lived with things because that’s what I was taught to do, my parents didn’t take us to doctors. I have extensive damage, most of which is in my spine. Doctors told me for the first couple years after diagnosis that they were really surprised I wasn’t in a wheelchair and was still so active and mobile. My best Nuerologist warned me though that as I got older I could start to develop disability from old damage and that’s exactly what has happened. The last big relapse damaged my brain stem and caused autonomic dysfunction so now I am 18 medications for so many things. It all just sucks.
I am so sorry to hear of what you are going through. I have only just been diagnosed last week with relapsing remitting MS. I am truly terrified and even the treatment options terrify me though I have not looked into them closely yet. I just had a look at my last MRI report and the condition is affecting both my brain and spinal cord, your history seems a lot like mine. May I ask at about what age you started developing the disabilities?
@@rosieposie9564 it is scary when first diagnosed. I am sure you have LOTS of questions and are probably finding all sorts of good (and bad) information on the internet. My daughter had her first symptom at age 18, still a senior in high school, Dx age 19. Now 22. Keep in mind that you will find great information here with Dr. B and also with Dr. Aaron Boster also on CZcams. What I have learned in this process is that 1-only talk about MS with friends, family, strangers when you want to and it's okay to push back when you start getting all sorts of unsolicted advice about medications, supplements, diet, etc. 2--stick to reserached-based treatments, 3-try to connect yourself as much as you can with others with MS. For us (well, maybe me), it was been incredibly helpful to talk to people with MS, understand their first symptoms, their disease trajectory (and actually for most people I met, it was surprisingly more benign than what I thought. Be advised that when you join FaceBook groups, read through sub-reddits, etc, they attract more people with symptoms, etc who are legit looking for support groups as opposed to a healthy silent majority for whom the most exciting thing to talk about in the day is paying a bill, a fight with a coworker, or a trip to Starbucks.
When I first found out I had MS last year in March Selma Blair was the first person I went to the video because I remember her talking to Robin Roberts about her multiple Scarosis and I didn't know anything about it I just knew that I had a friend that suffered with it when I was in a hospital for 2 months battling multiple sclerosis Selma Blair gave me hope
Reading some of these comments really solidifies how thankful I am and how lucky I feel. My friends always do a double take when I describe how lucky I feel, but really. Dx a year ago at 23 because of optic neuritis. Had symptoms that retrospectively started with a very mild drop foot at 13. Leg numbness in highschool. Horrendous fatigue almost had me drop out of my grad school program. I attributed my problems to being a clutz, ADHD, hypermobility/EDS, Covid fatigue. If it wasnt for such an obvious symptom like optic neuritis, I could have EASY gone a decade without a diagnosis. So thankful for the DMTs we have and the improved ability to diagnose. I wish everyone here well!
Selma did great on Dancing with the Stars! Very inspiring! Thanks for this update! Which comes first in MS disease pathology, brain lesions, or neuro inflammation? If inflammation, why isn’t more done to determine causes of inflammation? I love the quote by Dr. Perlmetter (neurologist, dietician, and author of Grain Brain and Brain Maker): “it’s not that we need to think outside of the box, but that we need to make the box bigger!” Have you ever spoken with Dr. Perlmetter, or had him on your channel? I suspect fasting may be more effective than pharmaceutical DMTs in regulating the immune system. Since there won’t be much money in a fasting study for drug companies, let’s fund it ourselves! And like Dr Hauser mentioned during your interview, even with B cell therapies there is progression due to damage by microglia on the nervous system (the brain, brain autopsy, etc..). First they tried T cell therapies, then B cell therapies (which I admit seem to slow progression clinically), sadly I believe that the body has many ways and pathways it can use to attack itself, probably some not discovered yet and I feel that not enough attention is given to why the immune response is attacking “self”. Perhaps because it varies so much from person to person. Anyway, Doc, what can you tell me about treating hand contractures?? I have been an amateur MS researcher for 14 years and the only cases I have observed helping hand contractures is a Wahls warrior testimony upon which a woman resolved her hand contracture by following a paleo type diet in The Wahls Protocol. The other was a documented miracle of a woman with severe MS in Lee Stroble’s book The Case for Miracles. Anyone else have any advice for sever hand contractures? Thank you Appreciate your channel Dr. Beaber!! P.S. green tea helps recharge stem cells - and you don’t have to go to Mexico! Research green tea and MS ❤️
Thank you for your video doc .. Personally this disease (MS) is frustrating over anything else.. BUT I'm grateful to live in a time and a country that can do medicine to make it better .. Keep up the good fight !! =]
Great video and very informative Dr Beaber! Thank you for explaining various treatments so well for us MS'ers. Much appreciated. Selma wrote a good book recently. Very funny like she is & well written. Smoldering MS seems to be a real thing. Symptoms on the inside are real yet many don't notice. Grateful thus far. Coming up on 2 years on Kisempta, stable and hoping this remains the case. Keeping stress very low, movement (yoga) & resting seems to work well for me! Thx again for all you do.
Thanks for the video. Diagnosed at 41 yo, after years of symptoms, HSCT at 43 yo (non myeloablative). 45 yo now. I regret the early menopause which brings a lot of health and relational problems, in addition to MS. I got some stiffness post HSCT and my vision went down by -1, so -3 now. I also feel better when I m outside or along. Public places make me feel worse even though nobody notice it. Because of menopause I regret sometimes to go for HSCT, but your video makes me feel that I ve had the right choice. 🙌
My path has been similar: diagnosed 2018, had Lemtrada within 3 months. Significant improvement/remission, with deterioration over the past year (increased daily pain, spasticity and fatigue). Awaiting annual MRI to see if there's been a clinical change. Very frustrating, as I had been walking further and had improved my fitness (and lost weight). So far, no pain meds have made much difference (currently trying Duloxetine: seems to help me cope with the pain rather than improve the pain itself).
So much ❤ for Selma. Stretching has eliminated most of my severe stiffness. (There are free stretching courses online if anyone is interested). Staying cool is key. Ceiling fan, open windows, take frequent breaks, wet hair, whatever works.
Hi from Israel interesting video my daughter suffers all the symptoms you have mentioned what is your opinion about taking Aspirin for pain.? considering the sideffects she has factor 5 leiden?
I was diagnosed at 36 during an episode of optical neuritis after YEARS of having doctors sweep symptoms under the rug- bladder issues were because I needed "to lose weight." Lost 80lbs, they're worse, facial numbness was because of my "history of anxiety." Massive fatigue was due to hormonal changes because I'm "a woman." [lord have mercy on the man who gave me that explanation]. It was such an incredible relief to finally be diagnosed not only because suddenly treatment options became available but I finally, for the first time in over a decade knew I wasn't crazy. I had also been experiencing MS hug, dystonia & spiderweb lightning nerve pain for which I finally had an explanation. I had already begun making changes to my diet prior to being diagnosed but added kesimpta and I've been stable for a year. Now my biggest daily struggle is fatigue and brain fog, which is tough because my work is creative and at times it seems like I can actually feel myself losing cognitive ability, on top of being a mom and the challenges & mental load that requires. I also have detrusor sphincter dyssynergia which is a major pain and makes it hard to leave the house.
34y, I was diagnosed when I was 29 after 3 relapses (ankle nerve and double vision). Ocrevus works very well, with zero relapses, EDDS ~3. I am thinking about aHSCT treatment, even saving some money, but maybe it is not for me, not at this time. What do you think? Now I have RRMS and hopefully, in the next 10-15 years, when I turn into SPMS, there will be a good treatment. Thanks for the videos.
Thanks Dr. Beaber! I appreciate you sharing this and your thoughts. Would I consider HSCT? Perhaps! I definitely take a more conservative approach to treatment with my MS but try to keep an open mind for the future. 😊
You need to f’ around to find what works. I’ve had MS for many years but recently diagnosed, previously had migraines, buzzing leg and bad memory (confounded by cannabis usage). I think cannabis in multiple ways is a helpful drug and I seemed it out to self medicate. I now get it legally. Exercising has always made me feel heaps better, surfing is a great anti dote, the sea can be immune modulating along with heavy doses of sun light. Steer clear of anti-autophagy diets like standard western diet which is mTOR expressive and cancer promoting.
Dx in 2017 age 42 with c/o “saddle anesthesia” symptoms after a bike ride down a bumpy street. Nope turns out I had MS and likely so for the greater portion of my whole life. MRI showed innumerable lesion load, black holes etc. Only symptom was profound fatigue up to that point. I feel relatively fine still today age 50. I take amantadine for the fatigue and find it very helpful.
47 year old female with PPMS. Finally diagnosed in 2020 after years of thinking I had a knee or hip issue that was causing pain and issues walking. I hope there comes a day when we can do a quick and accurate test to diagnose. It seems that the approach today is to rule out everything else on the planet before looking at MS as a possibility. By the time I was diagnosed, I was already a 6.5-7 EDSS and no time to really evaluate options, as my decline seemed to be accelerating. I did HSCT in August of 2021. Progression seems to have stopped, but hard to tell with PPMS. Unfortunately I am still unable to walk more than a few steps, but I keep up with neuro rehab and swimming.
Pain, spasticity, voice, numbness, headaches, flushing and more since I was 15. Got told it was rosacea and migraines. Finally got diagnosed at 46 and an accidental find while looking for MS, also an orange size brain tumour. Diagnosis of both MS and brain tumour on my right cerebellum same MRI.
Well doctor, my name is Rubén and I live in south america. My MS diagnoses arrived after more than a decade of receiving wrong interpretations of my exams and bloodworks. Around 2012 the disease appeared at first with a deep vertigo that american doctors thought was related to alergies. An ENT in Louisiana gave me a cortison shot that worked well for some time. But after losing the sight of an eye in 2014, I had more leg movement problems during my college studies in Europe. Since 2018 I started receiving Rituximab in my hometown, so I feel better. Now I am about to receive Ocrevus very soon...
Yes I’m from Philippines and had wrong diagnosis for years. I have fibromyalgia as well. Now I have flare-ups that I cannot manage. Will undergo MRI for this year both brain and spinal cord
The EDS is interesting. In your experience, do you have any thoughts on differential diagnosis (ie: EDS, FND)? Can you maybe make a video on potential misdiagnosis (not related to Selma Blaire), but maybe just generally speaking? Or how MS and EDS might be correlated? 🤷🏻♀
To my knowledge, there is no specific association between EDS and MS. I have a video on MS MRI mimics: czcams.com/video/sZVGs0dtL5I/video.html A study done at Cedar Sinai/UCLA (Los Angeles) found that 18% of people referred for MS had something else. Often, misdiagnosis is the result of misinterpretation of MRI findings. Study explained in this video: czcams.com/video/ciOUx7_3oiw/video.html Alternative diagnoses are shown in table 2 of their study here: www.clinicalkey.com/#!/content/playContent/1-s2.0-S2211034819300483?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211034819300483%3Fshowall%3Dtrue&referrer=https:%2F%2Fpubmed.ncbi.nlm.nih.gov%2F It is possible someone with functional neurological disorder could have an MRI with non-specific white matter lesions and be misdiagnosed with MS, and I have seen this in rare cases. Of course, people with MS can also be wrongly diagnosed with FND.
@@rehabhqofficial This has been reported as in here: www.ncbi.nlm.nih.gov/pmc/articles/PMC9547148/#:~:text=Chronic%20pain%20may%20be%20common,for%20the%20development%20of%20FMD.
I think my first MS symptoms where around age 10 or 11 years old. Pain with eye movement a little blurriness in one eye. Severe fatigue and pain, I missed a lot of school over the years. Left arm numbness, constantly getting pins and needles sensation in my feet. Feeling as if water was running down my legs. I would get what I call the free fall sensation in my legs. I have a lot of lesions in my cervical spinal cord. I confused doctors for years and finally asked to see a neurologist due to my cognition and speech quickly declining. I said its either a brain tumor or MS. I suffered for most my life and finally got diagnosed at age 37.
thanks for this. MS education is important for patients, caregivers and the general public. I was diagnosed when I was 54 (now 73). Cognitive not an issue (I still work and use advanced math daily for marketing problems). I have balance, muscle spasticity, and muscle atrophy (left leg) issues along with problems with my eye muscles so I see double if I use peripheral vision. I also have greatly reduced sensation in my right hand and both feet. If I get sick (e.g. I recently had Covid) it brings on a nasty flareup where I can barely walk because my balance gets so bad. It also brings on brain fog.
57 YO Male with PPMS. I appreciate all the shared stories and comments. I was diagnosed 18 months ago via MRI at KP/SD. Constant pain in both hands and feet, wobbly walking, fatigue, unable to stand for more than a few minutes, loss of words, but I am still working and walking. No-one at work knows so I must be okay on the outside. That lower back pain story hits home. I always thought my ""symptoms" were left-over of the car accident +/- 10 yrs ago. I can relate to almost all of your conversation.
I have many patients who retrospectively had MS for a long time, but their symptoms were attributed to another [real] orthopaedic problem in the back or lower extremities.
I had HSCT in Mexico after being diagnosed with aggressive RRMS but not offered this as an option. I am nearly 46 years old and have been in remission since transplant in December of 2022. Im rather upset that such a conservative approach is taken and I had to leave the country to be treated as I am symptom-wise much better than before. I was diagnosed less than a year from transplant with no years of ignored or misdiagnosed symptoms. Should this not be offered at diagnosis? I have met so many people on this journey and they all say they wished they had been transplanted sooner. I feel like my results are in part due to being treated so early on. Why is there so much hesitation from treating neurologists, even when the patient knows and is willing to take the risks? Why is there a lack of transparency on where MS can go, creating more fear and hesitation. Also, why is there not a more holistic approach taken in regards to mental health and the trauma of MS.
There are many reasons HSCT is not more commonly used including 1) Side effect profile, 2) increasing success with high-efficacy disease modifying therapies such as b-cell depleters, 3) lack of availability of HSCT (most bone marrow transplant teams would not offer treatment to people with autoimmune disease), 4) The fact that the best candidates for HSCT are young and may be adverse to fertility risk, 5) The fact that neurologists are not very familiar with HSCT in general, 6) Lack of economic incentive of pharmaceutical companies to promote HSCT as most drugs used in the conditioning regimens are older off-patent drugs like cyclophosphamide. There are some ongoing randomized trials comparing HSCT to higher-efficacy DMTs,
I was misdiagnosed by a LPN in Los Angeles who they passed off as a Dr. I knew it was MS but she said she didn’t think so which led to 8 months of looking at the wrong cause. I had to see two neurosurgeon to say that’s hand down no questions asked and go back to neurologist. Still my dr didn’t give me any steroids/fusion and two months later Mayo Clinic mri showed 30 new active lesions. Bacolofen helped but it seemed I was getting addicted to it so I stopped it and been fine since. Cynbalta didn’t work well for me but I’m working on trying to get an appointment with you since my neurologist left ucla, so as of now don’t have one.
Wow! Im glad she is doing much better. I understand where she’s coming from. I have dealt with the same thing, don’t get taken seriously. I have a great idea, how about an evaluation. I have been dismissed by several doctors since I was very young. I am now 52 and my symptoms are so severe it’s starting to affect my speech swallowing. It started when I was an elementary school and I couldn’t walk to school anymore, and I went to the doctors the hospital and they couldn’t come up with anything which is the story of my whole life in and out of the hospital, lifelong doctors, appointments and surgeries. Although nothing is showing on my bloodwork, some minor things which I think are important, but the doctors rule it off. I’m hopeless helpless, as I want had looked up to the healthcare system, but as I sit here disintegrating waiting for my next doctors appointment so can just gaslight me yet again. Actually had the last doctor told me he only had 15 minutes. He didn’t have time to go over all my symptoms or even even look at my records or my MRIs. I’m in Florida but I would have no problem going to California just to get the proper care from a great doctor. Doctors are hard to find.❤
non diagnosed for many years. My Family doctor and I were tricked by my having had tingly nerves, and a few bouts of wry neck. And years of perma tingles egaul on both sides in feet hands. Though i wonder if not knowing could have been just as well or even advantagious
What’s your thoughts on doing plasmaphorisis sp idk to stop flairs? Just a thought I work for a plasma center and was just thinking is the plasma is taken out would it not help stop it.
It is the increase in information bandwidth which increases cognitive load when out in a busy environment. People without cognitive issues do not realize this, it is subconscious processing, somethings you don’t know you have until it’s gone.
Age 33 was diagnosed with MS.3years ago. Hope to get HSCT this year. No medication is gelping, now i am on medication. In the start there was pilss, now i have injection once per month
I have been avoiding an LP for a yr. On Kesimpta for 11mos. Pain and stiffness daily. Nite time is the worse. I have a strange sensation in both forearms also mimicks RLS. Is that possible?
I am 46 myself, 47 in ~a month, and can trace my MS symptoms to before I was 10 easily. My diagnosis is SPMS and am locked to my wheelchair for now. I have a brother, a few years older, who has also been diagnosed with MS himself. We share a Mother, aka different Fathers, and his MS is about the same as mine. Pain has been a 'friend' most my life and 'good sleep' is only a pipe dream.
Hi there, ive had symptoms for years but doctors didn't seem to find anything. So I'd go away thinking im fine. However, i did mention a weakness in my left hand especially in my small finger, this i noted in my early 20s. I then had a tightness around my chest and stomach problems, mainly digestive. Again some tests but told nothing wrong, this happened around my late 20s. There was always fatigue which i put down to a busy lifestyle. Then in my 30s i had a lower back mri but nothing found. At this point i tried to just get on with my life and accept that all these unusual symptoms were just part of who I was. Then got to my late 40s after several visits to the doctors complaining about fatigue. Then it really started, shooting pain down both arms, weird neck pain (this had been happening for a while) right temple pain and also my right eye pain, ms hug, shock pain up spine when i bend my head, and over a period of two weeks struggled to lift both arms. And still the doctor didn't know what it was, saying " its not ms." It took 6 months before I had a mri scan, to then be told i that had a lot of lesions and a large one on neck. My hands still have a lack of sensation, weak left side, tingling, pain, stiffness, cognitive problems, bowel problems, fatigue. I take pregablin and bowel meds, was on copaxzone for approx year and half until injection sights were getting too uncomfortable to manage. I was offered other injectables but refused (maybe not wise.) At present no DMT age 60. And was diagnosed 2015. I have asked about going back on a DMT but consultant seems to dismiss the idea and says im doing ok? No family history however don't know my father's side. My mum has arthritis so was wondering whether autoimmune conditions within the family can be linked to ms.
Thanks, I am getting a sharp stabbing pain in my groin and didn't know what it's called. Dystonia, now I have a name for it! Does the leg just shoot out without consent?
I went 13 1/2 years for a final diagnosis then stricken with 3rd nerve cranial palsy, speech tremor and weakness on left leg in January 22, 2002 and having other symptoms growing up pre teen. I was diagnosed with fibromyalgia, neuralgia, back/spine issues and even mood disorder(bipolar depression) So in 2014 Dec I began stumbling and double vision (all the years between I suffered dizziness feelings (doc said vertigo) and falling and my eyes would get stuck and my voice would mess up while talking and I would have what I called swallowing that skipped. Diagnosed to the day on January 22,2015. 13yrs later. I have tried 7 treatments. All failed. Ppms. 5yrs not seen my neuro until February 2nd. She wants me to try ocrevus again. I'm now 58yo. Pretty much med free since diagnosed at age 49 since all made me seriously sick and or infections. I do not know what to do. I am falling and having my symptons listed. But meds long term?? Well, at my age atleast. 9 years gone by. 5 years running from treatment.
Her dystonia with her voice is still pretty bad. She did the HSCT treatment in chicago or somewhere in the U.S. She should've done MSC treatment with the spinal and intranasal method at a place in mexico. It would've done her much better and even resolved the whole thing.
Several medications I have found are helpful for Fatigue. Year 8 having MS. I do research on various things for a living. Quite bright; IQ 160 last time I checked. Hold on Cc; what I'm doing. See below: So; in essence, stop eating breakfast cereal. Got it. ... I figured out what you are talking about since Spring 2017. ... Here, id eat Wheaties in milk with even Equal. When I woke up in the morning, my eye was a bit sticky and slightly blurry. That was 7 years ago 7 years later, MS; {Year 8}; .... now Optic Neuritis in the same right eye. Strategy: Whal's Protocol, Atkins, Carnivore/ Keto, {Anti- parasitic Homeopathic Tinctures to address MS causal factors, plus liquid Stevia Tincture to address potential Lyme via Spirochetes as possible MS Diagnosis. Now { Introduction}; Dr. Madida; Ginko Balboa approach to improve Balance Disturbance; Supplement; 120 mg, Ginko Biloba; duration; 4-6 wks. Thank you. MM, A.A., A S., B A.MOD, JD CANDIDATE ✌️❤❤
Lovely. Yes; Optic Neuritis; Dec, 20th, 2023, self administered to hospital; 3-day Sulumedrol; discharged, Jan 4, 2024. To date Optic vision poor, slow improvement. Began further research on MS causes. Found 2 doctors claiming how they cured themselves. Skeptical at first, but my own research continues leading me to MS being caused, not so much via Virus, but likely because of {multi- strains of parasitic infection throughout the body, causing Substantial Neurological Deficiency due to Excreted Neurotoxins, Naturally Produced by Parasites; especially Parasite, well-known to invade CNS, BRAIN; producing Signs, e.g. Headache, Vision Impairment, Loss, Cough, Sinus Difficulty, Fatigue, etc. No Homeopathic medication available at the moment, began eating regular spice Cloves from kitchen pantry; Seeing noticable improvement in Vision post 12-14 Hrs..! 👍🙂❤❤❤
4 Tinctures: Black Walnut, Wormwood, liquid Cloves, and Liquid Stevia for Lyme disease Spirochetes; seems to help since 2017-2018. I can walk, slight decrease due to balance issue onset, but I can walk. Liquid Stevia from my research in 2017-2018, said that MS is just another form of Lyme disease. Liquid Stevia as a Tincture Kills Spirochetes, response for dimoshed neurological function, which is MS. ..what I read, friend and what the CZcams video folks were saying 7 summers ago.. Hope this helps Best, MM ❤❤❤
Lovely. Yes; Optic Neuritis; Dec, 20th, 2023, self administered to hospital; 3-day Sulumedrol; discharged, Jan 4, 2024. To date Optic vision poor, slow improvement. Began further research on MS causes. Found 2 doctors claiming how they cured themselves. Skeptical at first, but my own research continues leading me to MS being caused, not so much via Virus, but likely because of {multi- strains of parasitic infection throughout the body, causing Substantial Neurological Deficiency due to Excreted Neurotoxins, Naturally Produced by Parasites; especially Parasite, well-known to invade CNS, BRAIN; producing Signs, e.g. Headache, Vision Impairment, Loss, Cough, Sinus Difficulty, Fatigue, etc. No Homeopathic medication available at the moment, began eating regular spice Cloves from kitchen pantry; Seeing noticable improvement in Vision post 12-14 Hrs..! 👍🙂❤❤❤
There is actually evidence that MS is much less common in areas of the world where parasite infection is more common. One hypothesis is that parasite infection drives the immune system away from a t helper cell type 1 (TH1) response related to inflammation in MS.
@@DrBrandonBeaber Yes, I read that as well. However: Because We cannot know the exact type (s) of parasites affecting a given individual, it might be prudent to begin with Elimination of parasites, and weigh the components of the status of the patient for better or for worse I suspect.
To entertain the notion, that parasites are comparable to, say blood thinning leaches as a beneficial parasite, Yes.., - but just imagine just how long the host would truly survive where the parasite begins to impair, then disables, then causes the host to die due to the nature of a given parasite. This Dr., is the question we must first answer, then parasitic infection can be ruled out as a cause for Impairment due to a condition we call {Multiple..} Sclerosis...
Subacute combined degeneration from vitamin b12 deficiency is often misdagnosed as MS these days. There's tons of stories out there of people (usually ex-vegans) switching to carnivore or raw carnivore diet and reversing their "MS". Well either that merits further investigation (won't happen), or these people have SCD and it gets diagnosed as MS. Selma is vegan, she should consider strict raw carnivore to see if that alieviates the symptoms. There's also the issue of potential unknown/undiscovered amino acid analogues in various sources of plant protein that is poorly understood. We only just now are discovering how many there are and their role in disease. We KNOW they get incorporated into our proteins, causing malformation and all types of trouble. One notable example is ODAP from the Grass Pea. It would be wise to eliminate grains, legumes and vegetables to see if she improves.
None of my patients with subacute combined generation were vegans (because they typically take supplements). I did have one vegan patient with b12-related peripheral neuropathy. More info on B12 deficiency related neurological disease here: czcams.com/video/OPHWGDIGDLw/video.html
I love Selma!! Thank you for this video. She was the first person i could relate to with this snowflake disease Celebrities are real people and she really shows the truth in ms and is not afraid to educate. "Still lucky. Still grateful. I'm okay. But still a bummer". I applied to do stem cell with Dr Burt. But now that the results are coming back that its not much better than strongest DMT... im not as willing to go through all that.
I can 100% guarantee ill get stiffer limbs in public. I dont feel consciously anxious even though i have to walk with two crutches. It kinda sucks and to date, nothing has made a difference. At home its much better.
Hello MS Warrior I take the same medication although I use a cane in a row later Walker when I have to walk far but stands I was diagnosed last year in March at the age of 43 it's been one devastating thing for myself I would say I'm trying to get through the grieving stage and it's very hard but I'm hanging in there
@@naturallydope6971 Hang on there 👍. I was diagnosed at the age of 36 when I was walking normally. I am 45 now and I use a walker to get around my house. No more long walks. Ocrevus is the best they have now until something new comes around. I noticed the medicine cost $95k 😯 thank you Medicare is all I can say about that.
In one brief 10 minute appointment I was diagnosed with Conversion Disorder, because the neurologist thought my arm weakness was fake. I actually have MS with brain and spine lesions and at the time of the appointment, I had Transverse Myelitis, with a large active lesion in my cervical spine. Unfortunately, it's very difficult to be taken seriously by medical professionals once this diagnosis is made, even if later found to be incorrect.
Yes, I was misdiagnosed in my early 30’s and finally was diagnosed in my early 50’s. Fifteen years later, I am still
fighting the good fight with holistic and traditional medical protocol. I wish that all of us that have this disease find our miracle to live our best lives.
I have an easier time moving when I'm by myself too. I think that it's because anticipating the movements of others and coordinating around them is a heavier cognitive lift than moving by myself. Moving around others wears me out a lot faster than moving around by myself.
Exactly!
Ask your doctor about Gelenya
Me too.
Fascinating. It's great she's publicising the condition and its hidden impacts. British male 57, diagnosed RRMS 1998. EDSS 4.5 so generally doing well. Had to retire early due to cognitive symptoms but enjoying retirement. You're doing a great job, doctor!
Thanks
@@DrBrandonBeaberthank you so much for your explanation. By the way, I read about drugs to remyelinate as well as Pipe307 and Pipe 791 by Contineum Therapeutics, but only for the first one in joint venture with J&J. So, it's a big hope for everyone of us. PS I am waiting for Gold nanocrystals CNM-AU8....😊
@@DrBrandonBeaberthank you so much for everything. You are our source of hope and happiness. We glance over these bad days. Cant wait to see one of your videos regarding to gold nanocrystals CNM-AU8 by Clene. And even Contineum Therapeutics is developing pipe-307 in phase 2 (in joint venture with J&J) that allows remyelination. I cross the fingers...
@@aleien302 Here is my video on CNM AU8: czcams.com/video/zkkvE2xuOjA/video.html
So glad you’re speaking about invisible symptoms. People don’t believe what they don’t see.
Great to get an update in Selma. She was so sick when first came out. No news on her speech? That was quite a serious symptom. I have MS and went undiagnosed for well I’ve 10 years as I was being treated for spinal problem as well. when MRI first came into use I was finally able to get a difinative diagnosis. It’s been hard but I still appear well to outsiders. I was later diagnosed with EDS as well. What a coincidence. Consequently I easily injure too. Wrists in particular are often sprained as are shoulders. Swimming is my favourite exercise. Sometimes just didn’t in water is enough but i do try to turn it into an exercise workout if I’m able. Doing great for nearly 40 years since disgnosed so I feel fortunate. I do wish it was a different lottery that I’d won though lol
In her documentary, her speech disorder (spastic dysphonia) had significantly improved, but I am not sure how it is now.
So glad to hear you're doing well after 40 yrs since Dx. My daughter had her first symptom age 18 yrs, Dx at 19, started a DMT right away, is 21, no symptoms and in nursing school. I feel enouraged when long-haulers such as yourself are brave enough to share and also report favorable outcomes.
@@debraindxb thank you. Your daughters prognosis is good I’m sure. The new meds are changing the face of MS. Best wishes x
@@debraindxb I feel the same about long haulers with MS.
Lifetime of symptoms...I get it. Just got MS diagnosis a week ago. I can definitely trace back symptoms to 29-30 years ago but always justified then because numbness and headaches were all legitimately blamed on having my neck broken a few years earlier. And if I look back to Jr. High school days, I definitely was having a lot of falls at school especially and one incident landed me at emergency getting 10 stitches across my knee. I have had many bad falls since then. Always clumsy, always dropping things. Always difficulty focusing and tuning out when people were talking...so many signs. Unfortunately when I took it to my family doctor a year ago when I lost my mobility and had new numbness and hallucinating cigarette smoke...I had 7 pages of symptoms to report and dates as to when they first began. That was just the tip of the iceberg....it is your videos along with Dr. Boster that really prepared me for this diagnosis and a few other MS Warriors. So the internet...isn't all bad 😊. (Tonia in Newfoundand, Canada 🇨🇦)
At age 49 I was diagnosed with RRMS in 2021 and it took FOREVER to get a diagnosis. It'ts nice to see these older actors and actresses bringing MS to the forefront. The archaic thinking that MS is typically for young people is what makes getting diagnosed often hard.
The average age of onset of MS is 30, but I have patients with onset > 70
Thanks for that update doctor! I appreciate the videos great source of information!
Thank you for the update. I love what Selma has done to give people with MS a voice 😊
Thank you for your channel, it's good you are to the point and don't have a forgone conclusion of worsening health as what we need is hope and optimism. I was diagnosed 8 years ago and had HSCT done 18mths ago and still experiencing some mild progression but very grateful to have had this treatment done. It is always good to hear of new medication in the pipeline
Newly diagnosed after 14 years with PPMS. Worked hard trying to get stronger for years with no getting back to baseline. Chasing lower lumbar and other back problems during those years. Diagnosis for me is a blessing in that I now know why I can't seem to keep the small gains I get. Felt like I was going crazy. Left side affected. I finally have an answer! I can still walk althought it's very hard and my left side is most affected. I do butt kicking PT every day. Never give up. Keep on exercising! The mind blowing take-away from this video was when she stated that she walks worse when people are watching. I thought I was alone in this and it is also my experience. I even told a few close friends and they of course humor me. 😆 Will put ideas for future videos in another post. Thanks for the great work!
Thank you Dr. Beaber.
Selma Blair has helped raise a lot of awareness of MS. She's had a rough MS journey, I hope she's able to recover more over time. Similar to her, I feel that I may have had undiagnosed MS early in life as well. I didn't know she also has EDS. I have a cousin with Hasimodo's and EDS. Her EDS is the mild hyper flexibility type, but she does have chronic joint pain which was especially pronounced during her 3 pregnancies.
Video suggestion: I recently read an article about an experimental CAR T-Cell therapy KYV-101. Can you post a video explaining that and how it differs from current B-cell therapies. I'm also curious about the future of BTKIs since the recent phase 3 failure of one of the candidates.
Thanks for the suggestion about car t therapies. I will look into this
I definitely have had symptoms since my early teens, I always just lived with things because that’s what I was taught to do, my parents didn’t take us to doctors. I have extensive damage, most of which is in my spine. Doctors told me for the first couple years after diagnosis that they were really surprised I wasn’t in a wheelchair and was still so active and mobile. My best Nuerologist warned me though that as I got older I could start to develop disability from old damage and that’s exactly what has happened. The last big relapse damaged my brain stem and caused autonomic dysfunction so now I am 18 medications for so many things. It all just sucks.
I am so sorry to hear of what you are going through. I have only just been diagnosed last week with relapsing remitting MS. I am truly terrified and even the treatment options terrify me though I have not looked into them closely yet. I just had a look at my last MRI report and the condition is affecting both my brain and spinal cord, your history seems a lot like mine. May I ask at about what age you started developing the disabilities?
@@rosieposie9564 it is scary when first diagnosed. I am sure you have LOTS of questions and are probably finding all sorts of good (and bad) information on the internet. My daughter had her first symptom at age 18, still a senior in high school, Dx age 19. Now 22. Keep in mind that you will find great information here with Dr. B and also with Dr. Aaron Boster also on CZcams. What I have learned in this process is that
1-only talk about MS with friends, family, strangers when you want to and it's okay to push back when you start getting all sorts of unsolicted advice about medications, supplements, diet, etc.
2--stick to reserached-based treatments,
3-try to connect yourself as much as you can with others with MS. For us (well, maybe me), it was been incredibly helpful to talk to people with MS, understand their first symptoms, their disease trajectory (and actually for most people I met, it was surprisingly more benign than what I thought. Be advised that when you join FaceBook groups, read through sub-reddits, etc, they attract more people with symptoms, etc who are legit looking for support groups as opposed to a healthy silent majority for whom the most exciting thing to talk about in the day is paying a bill, a fight with a coworker, or a trip to Starbucks.
Nice work...Dx 2016....Hsct in 2017....still running 16 km ...53 years old
Wow.
czcams.com/video/1YWrZ7tTq-Y/video.html@@AnnaleishaMae
When I first found out I had MS last year in March Selma Blair was the first person I went to the video because I remember her talking to Robin Roberts about her multiple Scarosis and I didn't know anything about it I just knew that I had a friend that suffered with it when I was in a hospital for 2 months battling multiple sclerosis Selma Blair gave me hope
Reading some of these comments really solidifies how thankful I am and how lucky I feel. My friends always do a double take when I describe how lucky I feel, but really. Dx a year ago at 23 because of optic neuritis. Had symptoms that retrospectively started with a very mild drop foot at 13. Leg numbness in highschool. Horrendous fatigue almost had me drop out of my grad school program. I attributed my problems to being a clutz, ADHD, hypermobility/EDS, Covid fatigue. If it wasnt for such an obvious symptom like optic neuritis, I could have EASY gone a decade without a diagnosis. So thankful for the DMTs we have and the improved ability to diagnose. I wish everyone here well!
Selma did great on Dancing with the Stars! Very inspiring! Thanks for this update!
Which comes first in MS disease pathology, brain lesions, or neuro inflammation? If inflammation, why isn’t more done to determine causes of inflammation?
I love the quote by Dr. Perlmetter (neurologist, dietician, and author of Grain Brain and Brain Maker): “it’s not that we need to think outside of the box, but that we need to make the box bigger!” Have you ever spoken with Dr. Perlmetter, or had him on your channel?
I suspect fasting may be more effective than pharmaceutical DMTs in regulating the immune system. Since there won’t be much money in a fasting study for drug companies, let’s fund it ourselves! And like Dr Hauser mentioned during your interview, even with B cell therapies there is progression due to damage by microglia on the nervous system (the brain, brain autopsy, etc..). First they tried T cell therapies, then B cell therapies (which I admit seem to slow progression clinically), sadly I believe that the body has many ways and pathways it can use to attack itself, probably some not discovered yet and I feel that not enough attention is given to why the immune response is attacking “self”. Perhaps because it varies so much from person to person.
Anyway, Doc, what can you tell me about treating hand contractures?? I have been an amateur MS researcher for 14 years and the only cases I have observed helping hand contractures is a Wahls warrior testimony upon which a woman resolved her hand contracture by following a paleo type diet in The Wahls Protocol. The other was a documented miracle of a woman with severe MS in Lee Stroble’s book The Case for Miracles. Anyone else have any advice for sever hand contractures? Thank you
Appreciate your channel Dr. Beaber!!
P.S. green tea helps recharge stem cells - and you don’t have to go to Mexico! Research green tea and MS ❤️
Thank you for your video doc ..
Personally this disease (MS) is frustrating over anything else..
BUT
I'm grateful to live in a time and a country that can do medicine to make it better ..
Keep up the good fight !!
=]
Great video and very informative Dr Beaber! Thank you for explaining various treatments so well for us MS'ers. Much appreciated. Selma wrote a good book recently. Very funny like she is & well written. Smoldering MS seems to be a real thing. Symptoms on the inside are real yet many don't notice. Grateful thus far. Coming up on 2 years on Kisempta, stable and hoping this remains the case. Keeping stress very low, movement (yoga) & resting seems to work well for me! Thx again for all you do.
I actually read her book and did a review on it here: czcams.com/video/2EdOAYsaqTs/video.html
Thanks for the video. Diagnosed at 41 yo, after years of symptoms, HSCT at 43 yo (non myeloablative). 45 yo now. I regret the early menopause which brings a lot of health and relational problems, in addition to MS. I got some stiffness post HSCT and my vision went down by -1, so -3 now. I also feel better when I m outside or along. Public places make me feel worse even though nobody notice it. Because of menopause I regret sometimes to go for HSCT, but your video makes me feel that I ve had the right choice. 🙌
Do you recommend Lyrica or Cymbalta for sore nerve pain in shoulders and back?
My path has been similar: diagnosed 2018, had Lemtrada within 3 months. Significant improvement/remission, with deterioration over the past year (increased daily pain, spasticity and fatigue). Awaiting annual MRI to see if there's been a clinical change. Very frustrating, as I had been walking further and had improved my fitness (and lost weight). So far, no pain meds have made much difference (currently trying Duloxetine: seems to help me cope with the pain rather than improve the pain itself).
So much ❤ for Selma.
Stretching has eliminated most of my severe stiffness. (There are free stretching courses online if anyone is interested). Staying cool is key. Ceiling fan, open windows, take frequent breaks, wet hair, whatever works.
I'm interested in the stretching! I love Selma too.
I am an opposite. Cold bad, heat good.
I’m interested in stretching clas as well. Thank you!
Hi from Israel interesting video my daughter suffers all the symptoms you have mentioned what is your opinion about taking Aspirin for pain.? considering the sideffects she has factor 5 leiden?
What do you do to help regenerate nerves?
I was diagnosed at 36 during an episode of optical neuritis after YEARS of having doctors sweep symptoms under the rug- bladder issues were because I needed "to lose weight." Lost 80lbs, they're worse, facial numbness was because of my "history of anxiety." Massive fatigue was due to hormonal changes because I'm "a woman." [lord have mercy on the man who gave me that explanation]. It was such an incredible relief to finally be diagnosed not only because suddenly treatment options became available but I finally, for the first time in over a decade knew I wasn't crazy. I had also been experiencing MS hug, dystonia & spiderweb lightning nerve pain for which I finally had an explanation. I had already begun making changes to my diet prior to being diagnosed but added kesimpta and I've been stable for a year. Now my biggest daily struggle is fatigue and brain fog, which is tough because my work is creative and at times it seems like I can actually feel myself losing cognitive ability, on top of being a mom and the challenges & mental load that requires. I also have detrusor sphincter dyssynergia which is a major pain and makes it hard to leave the house.
Been there, done that. ✔️
34y, I was diagnosed when I was 29 after 3 relapses (ankle nerve and double vision). Ocrevus works very well, with zero relapses, EDDS ~3. I am thinking about aHSCT treatment, even saving some money, but maybe it is not for me, not at this time. What do you think? Now I have RRMS and hopefully, in the next 10-15 years, when I turn into SPMS, there will be a good treatment. Thanks for the videos.
Great video Dr. Beaber! Do you have any updates on the mRNA vaccine for MS?
I do not have any updates at this time, but I will do a video if there is more data.
Thanks Dr. Beaber! I appreciate you sharing this and your thoughts. Would I consider HSCT? Perhaps! I definitely take a more conservative approach to treatment with my MS but try to keep an open mind for the future. 😊
Don't wait...
You need to f’ around to find what works. I’ve had MS for many years but recently diagnosed, previously had migraines, buzzing leg and bad memory (confounded by cannabis usage). I think cannabis in multiple ways is a helpful drug and I seemed it out to self medicate. I now get it legally. Exercising has always made me feel heaps better, surfing is a great anti dote, the sea can be immune modulating along with heavy doses of sun light. Steer clear of anti-autophagy diets like standard western diet which is mTOR expressive and cancer promoting.
Dx in 2017 age 42 with c/o “saddle anesthesia” symptoms after a bike ride down a bumpy street. Nope turns out I had MS and likely so for the greater portion of my whole life. MRI showed innumerable lesion load, black holes etc. Only symptom was profound fatigue up to that point. I feel relatively fine still today age 50. I take amantadine for the fatigue and find it very helpful.
Great explanation for many to understand the invisibleness of our disease.
#Sharingiscaring
47 year old female with PPMS. Finally diagnosed in 2020 after years of thinking I had a knee or hip issue that was causing pain and issues walking. I hope there comes a day when we can do a quick and accurate test to diagnose. It seems that the approach today is to rule out everything else on the planet before looking at MS as a possibility. By the time I was diagnosed, I was already a 6.5-7 EDSS and no time to really evaluate options, as my decline seemed to be accelerating. I did HSCT in August of 2021. Progression seems to have stopped, but hard to tell with PPMS. Unfortunately I am still unable to walk more than a few steps, but I keep up with neuro rehab and swimming.
Everyone tells different versions of the same story. 😢
Very interesting!!
Pain, spasticity, voice, numbness, headaches, flushing and more since I was 15.
Got told it was rosacea and migraines.
Finally got diagnosed at 46 and an accidental find while looking for MS, also an orange size brain tumour.
Diagnosis of both MS and brain tumour on my right cerebellum same MRI.
Well doctor, my name is Rubén and I live in south america. My MS diagnoses arrived after more than a decade of receiving wrong interpretations of my exams and bloodworks. Around 2012 the disease appeared at first with a deep vertigo that american doctors thought was related to alergies. An ENT in Louisiana gave me a cortison shot that worked well for some time.
But after losing the sight of an eye in 2014, I had more leg movement problems during my college studies in Europe. Since 2018 I started receiving Rituximab in my hometown, so I feel better.
Now I am about to receive Ocrevus very soon...
Yes I’m from Philippines and had wrong diagnosis for years. I have fibromyalgia as well. Now I have flare-ups that I cannot manage. Will undergo MRI for this year both brain and spinal cord
Ideas for future videos. Non drug ideas for muscle pain and weakness. Diet, exercise, relationships, etc.
The EDS is interesting. In your experience, do you have any thoughts on differential diagnosis (ie: EDS, FND)? Can you maybe make a video on potential misdiagnosis (not related to Selma Blaire), but maybe just generally speaking? Or how MS and EDS might be correlated? 🤷🏻♀
To my knowledge, there is no specific association between EDS and MS. I have a video on MS MRI mimics: czcams.com/video/sZVGs0dtL5I/video.html A study done at Cedar Sinai/UCLA (Los Angeles) found that 18% of people referred for MS had something else. Often, misdiagnosis is the result of misinterpretation of MRI findings. Study explained in this video: czcams.com/video/ciOUx7_3oiw/video.html Alternative diagnoses are shown in table 2 of their study here: www.clinicalkey.com/#!/content/playContent/1-s2.0-S2211034819300483?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211034819300483%3Fshowall%3Dtrue&referrer=https:%2F%2Fpubmed.ncbi.nlm.nih.gov%2F It is possible someone with functional neurological disorder could have an MRI with non-specific white matter lesions and be misdiagnosed with MS, and I have seen this in rare cases. Of course, people with MS can also be wrongly diagnosed with FND.
@@DrBrandonBeaber awesome! Thanks for all the resources and for your thoughts!
In my experience, some people with FND also have EDS. Does research support this?
@@rehabhqofficial This has been reported as in here: www.ncbi.nlm.nih.gov/pmc/articles/PMC9547148/#:~:text=Chronic%20pain%20may%20be%20common,for%20the%20development%20of%20FMD.
I think my first MS symptoms where around age 10 or 11 years old. Pain with eye movement a little blurriness in one eye. Severe fatigue and pain, I missed a lot of school over the years. Left arm numbness, constantly getting pins and needles sensation in my feet. Feeling as if water was running down my legs. I would get what I call the free fall sensation in my legs. I have a lot of lesions in my cervical spinal cord. I confused doctors for years and finally asked to see a neurologist due to my cognition and speech quickly declining. I said its either a brain tumor or MS. I suffered for most my life and finally got diagnosed at age 37.
thanks for this. MS education is important for patients, caregivers and the general public. I was diagnosed when I was 54 (now 73). Cognitive not an issue (I still work and use advanced math daily for marketing problems). I have balance, muscle spasticity, and muscle atrophy (left leg) issues along with problems with my eye muscles so I see double if I use peripheral vision. I also have greatly reduced sensation in my right hand and both feet. If I get sick (e.g. I recently had Covid) it brings on a nasty flareup where I can barely walk because my balance gets so bad. It also brings on brain fog.
57 YO Male with PPMS. I appreciate all the shared stories and comments.
I was diagnosed 18 months ago via MRI at KP/SD.
Constant pain in both hands and feet, wobbly walking, fatigue, unable to stand for more than a few minutes, loss of words, but I am still working and walking. No-one at work knows so I must be okay on the outside. That lower back pain story hits home. I always thought my ""symptoms" were left-over of the car accident +/- 10 yrs ago. I can relate to almost all of your conversation.
I have many patients who retrospectively had MS for a long time, but their symptoms were attributed to another [real] orthopaedic problem in the back or lower extremities.
I had HSCT in Mexico after being diagnosed with aggressive RRMS but not offered this as an option. I am nearly 46 years old and have been in remission since transplant in December of 2022. Im rather upset that such a conservative approach is taken and I had to leave the country to be treated as I am symptom-wise much better than before. I was diagnosed less than a year from transplant with no years of ignored or misdiagnosed symptoms. Should this not be offered at diagnosis? I have met so many people on this journey and they all say they wished they had been transplanted sooner. I feel like my results are in part due to being treated so early on. Why is there so much hesitation from treating neurologists, even when the patient knows and is willing to take the risks? Why is there a lack of transparency on where MS can go, creating more fear and hesitation. Also, why is there not a more holistic approach taken in regards to mental health and the trauma of MS.
There are many reasons HSCT is not more commonly used including 1) Side effect profile, 2) increasing success with high-efficacy disease modifying therapies such as b-cell depleters, 3) lack of availability of HSCT (most bone marrow transplant teams would not offer treatment to people with autoimmune disease), 4) The fact that the best candidates for HSCT are young and may be adverse to fertility risk, 5) The fact that neurologists are not very familiar with HSCT in general, 6) Lack of economic incentive of pharmaceutical companies to promote HSCT as most drugs used in the conditioning regimens are older off-patent drugs like cyclophosphamide. There are some ongoing randomized trials comparing HSCT to higher-efficacy DMTs,
I'm looking forward to seeing the results. Keep up the great work, Dr! @@DrBrandonBeaber
I was misdiagnosed by a LPN in Los Angeles who they passed off as a Dr. I knew it was MS but she said she didn’t think so which led to 8 months of looking at the wrong cause. I had to see two neurosurgeon to say that’s hand down no questions asked and go back to neurologist. Still my dr didn’t give me any steroids/fusion and two months later Mayo Clinic mri showed 30 new active lesions. Bacolofen helped but it seemed I was getting addicted to it so I stopped it and been fine since. Cynbalta didn’t work well for me but I’m working on trying to get an appointment with you since my neurologist left ucla, so as of now don’t have one.
Wow! Im glad she is doing much better. I understand where she’s coming from. I have dealt with the same thing, don’t get taken seriously. I have a great idea, how about an evaluation. I have been dismissed by several doctors since I was very young. I am now 52 and my symptoms are so severe it’s starting to affect my speech swallowing. It started when I was an elementary school and I couldn’t walk to school anymore, and I went to the doctors the hospital and they couldn’t come up with anything which is the story of my whole life in and out of the hospital, lifelong doctors, appointments and surgeries. Although nothing is showing on my bloodwork, some minor things which I think are important, but the doctors rule it off. I’m hopeless helpless, as I want had looked up to the healthcare system, but as I sit here disintegrating waiting for my next doctors appointment so can just gaslight me yet again. Actually had the last doctor told me he only had 15 minutes. He didn’t have time to go over all my symptoms or even even look at my records or my MRIs. I’m in Florida but I would have no problem going to California just to get the proper care from a great doctor. Doctors are hard to find.❤
how would this work with ppms
non diagnosed for many years. My Family doctor and I were tricked by my having had tingly nerves, and a few bouts of wry neck. And years of perma tingles egaul on both sides in feet hands. Though i wonder if not knowing could have been just as well or even advantagious
What’s your thoughts on doing plasmaphorisis sp idk to stop flairs? Just a thought I work for a plasma center and was just thinking is the plasma is taken out would it not help stop it.
Sorry Ms is Mssing self edit as needed lol
Hi,Doctor can you make videos on NMOSD. That would be helpful for all NMOSD patients.
Here is my video on NMO: czcams.com/video/xBCke5TsDGA/video.html A video on MOGAD will be posted here in 2 weeks.
@@DrBrandonBeaber yes I have seen it already. Hopefully in upcoming days we can get more videos on NMOSD
@@ARALVE-me6ee To be honest I will probably not make many videos on this topic.
I live in Chicago and my insurance isn't going to cover that it's enough they be wanting a PA for to approve my avonvex 30 mcg pen kit
I did the same treatment she did from the same Doctor at the same time. Still in remission but have the lingering past issues still there as well.
There is no remission. You have it.
@@paulamieczkowski2152 the better explanation I guess to say that I have no new active lesions
@@RushMayhemIV you have it or you don’t. Good days or bad perhaps.
It is the increase in information bandwidth which increases cognitive load when out in a busy environment. People without cognitive issues do not realize this, it is subconscious processing, somethings you don’t know you have until it’s gone.
Age 33 was diagnosed with MS.3years ago. Hope to get HSCT this year. No medication is gelping, now i am on medication. In the start there was pilss, now i have injection once per month
I have been avoiding an LP for a yr. On Kesimpta for 11mos. Pain and stiffness daily. Nite time is the worse. I have a strange sensation in both forearms also mimicks RLS. Is that possible?
Certainly people with MS can also have restless legs syndrome or very similar symptoms.
absolutely yes to HSCT it even pays for itself in 1.5 yrs. It should be covered - and offered within the first years of diagnosis. About 75% success!
I am 46 myself, 47 in ~a month, and can trace my MS symptoms to before I was 10 easily. My diagnosis is SPMS and am locked to my wheelchair for now. I have a brother, a few years older, who has also been diagnosed with MS himself. We share a Mother, aka different Fathers, and his MS is about the same as mine. Pain has been a 'friend' most my life and 'good sleep' is only a pipe dream.
@wperrottoiii
Hugs. Thank you for sharing. I wish you and your brother the best
Hi there, ive had symptoms for years but doctors didn't seem to find anything. So I'd go away thinking im fine. However, i did mention a weakness in my left hand especially in my small finger, this i noted in my early 20s. I then had a tightness around my chest and stomach problems, mainly digestive. Again some tests but told nothing wrong, this happened around my late 20s. There was always fatigue which i put down to a busy lifestyle. Then in my 30s i had a lower back mri but nothing found. At this point i tried to just get on with my life and accept that all these unusual symptoms were just part of who I was. Then got to my late 40s after several visits to the doctors complaining about fatigue. Then it really started, shooting pain down both arms, weird neck pain (this had been happening for a while) right temple pain and also my right eye pain, ms hug, shock pain up spine when i bend my head, and over a period of two weeks struggled to lift both arms. And still the doctor didn't know what it was, saying " its not ms." It took 6 months before I had a mri scan, to then be told i that had a lot of lesions and a large one on neck. My hands still have a lack of sensation, weak left side, tingling, pain, stiffness, cognitive problems, bowel problems, fatigue. I take pregablin and bowel meds, was on copaxzone for approx year and half until injection sights were getting too uncomfortable to manage. I was offered other injectables but refused (maybe not wise.) At present no DMT age 60. And was diagnosed 2015. I have asked about going back on a DMT but consultant seems to dismiss the idea and says im doing ok? No family history however don't know my father's side. My mum has arthritis so was wondering whether autoimmune conditions within the family can be linked to ms.
Thanks, I am getting a sharp stabbing pain in my groin and didn't know what it's called. Dystonia, now I have a name for it! Does the leg just shoot out without consent?
I went 13 1/2 years for a final diagnosis then stricken with 3rd nerve cranial palsy, speech tremor and weakness on left leg in January 22, 2002 and having other symptoms growing up pre teen. I was diagnosed with fibromyalgia, neuralgia, back/spine issues and even mood disorder(bipolar depression) So in 2014 Dec I began stumbling and double vision (all the years between I suffered dizziness feelings (doc said vertigo) and falling and my eyes would get stuck and my voice would mess up while talking and I would have what I called swallowing that skipped. Diagnosed to the day on January 22,2015. 13yrs later. I have tried 7 treatments. All failed. Ppms. 5yrs not seen my neuro until February 2nd. She wants me to try ocrevus again. I'm now 58yo. Pretty much med free since diagnosed at age 49 since all made me seriously sick and or infections. I do not know what to do. I am falling and having my symptons listed. But meds long term?? Well, at my age atleast. 9 years gone by. 5 years running from treatment.
Her dystonia with her voice is still pretty bad. She did the HSCT treatment in chicago or somewhere in the U.S. She should've done MSC treatment with the spinal and intranasal method at a place in mexico. It would've done her much better and even resolved the whole thing.
2:38 why not GABA rather than gabapentin?
Not asking for “Medical Advice “…
What can be used/taken to reduce fatigue/lassitude? (Rx or OTC)
Several medications I have found are helpful for Fatigue. Year 8 having MS. I do research on various things for a living. Quite bright; IQ 160 last time I checked. Hold on
Cc; what I'm doing. See below:
So; in essence, stop eating breakfast cereal. Got it. ... I figured out what you are talking about since Spring 2017. ... Here, id eat Wheaties in milk with even Equal. When I woke up in the morning, my eye was a bit sticky and slightly blurry. That was 7 years ago
7 years later, MS; {Year 8}; .... now Optic Neuritis in the same right eye. Strategy: Whal's Protocol, Atkins, Carnivore/ Keto, {Anti- parasitic Homeopathic Tinctures to address MS causal factors, plus liquid Stevia Tincture to address potential Lyme via Spirochetes as possible MS Diagnosis.
Now { Introduction}; Dr. Madida; Ginko Balboa approach to improve Balance Disturbance; Supplement; 120 mg, Ginko Biloba; duration; 4-6 wks.
Thank you.
MM, A.A., A
S., B
A.MOD, JD CANDIDATE ✌️❤❤
Lovely. Yes; Optic Neuritis; Dec, 20th, 2023, self administered to hospital; 3-day Sulumedrol; discharged, Jan 4, 2024. To date Optic vision poor, slow improvement.
Began further research on MS causes. Found 2 doctors claiming how they cured themselves. Skeptical at first, but my own research continues leading me to MS being caused, not so much via Virus, but likely because of {multi- strains of parasitic infection throughout the body, causing Substantial Neurological Deficiency due to Excreted Neurotoxins, Naturally Produced by Parasites; especially Parasite, well-known to invade CNS, BRAIN; producing Signs, e.g. Headache, Vision Impairment, Loss, Cough, Sinus Difficulty, Fatigue, etc.
No Homeopathic medication available at the moment, began eating regular spice Cloves from kitchen pantry; Seeing noticable improvement in Vision post 12-14 Hrs..! 👍🙂❤❤❤
02/21/24; Ginko Biloba; 3 tablets; 60 mg. 2 times daily. Seeing noticable improvement post initial vision loss. Also: slight balance improvement.
4 Tinctures: Black Walnut, Wormwood, liquid Cloves, and Liquid Stevia for Lyme disease Spirochetes; seems to help since 2017-2018. I can walk, slight decrease due to balance issue onset, but I can walk. Liquid Stevia from my research in 2017-2018, said that MS is just another form of Lyme disease. Liquid Stevia as a Tincture Kills Spirochetes, response for dimoshed neurological function, which is MS. ..what I read, friend and what the CZcams video folks were saying 7 summers ago..
Hope this helps
Best, MM ❤❤❤
Hope this continues to do well for you!@@user-ig3kn2ly2x
Lovely. Yes; Optic Neuritis; Dec, 20th, 2023, self administered to hospital; 3-day Sulumedrol; discharged, Jan 4, 2024. To date Optic vision poor, slow improvement.
Began further research on MS causes. Found 2 doctors claiming how they cured themselves. Skeptical at first, but my own research continues leading me to MS being caused, not so much via Virus, but likely because of {multi- strains of parasitic infection throughout the body, causing Substantial Neurological Deficiency due to Excreted Neurotoxins, Naturally Produced by Parasites; especially Parasite, well-known to invade CNS, BRAIN; producing Signs, e.g. Headache, Vision Impairment, Loss, Cough, Sinus Difficulty, Fatigue, etc.
No Homeopathic medication available at the moment, began eating regular spice Cloves from kitchen pantry; Seeing noticable improvement in Vision post 12-14 Hrs..! 👍🙂❤❤❤
There is actually evidence that MS is much less common in areas of the world where parasite infection is more common. One hypothesis is that parasite infection drives the immune system away from a t helper cell type 1 (TH1) response related to inflammation in MS.
@@DrBrandonBeaber Yes, I read that as well. However: Because We cannot know the exact type (s) of parasites affecting a given individual, it might be prudent to begin with Elimination of parasites, and weigh the components of the status of the patient for better or for worse I suspect.
To entertain the notion, that parasites are comparable to, say blood thinning leaches as a beneficial parasite, Yes.., - but just imagine just how long the host would truly survive where the parasite begins to impair, then disables, then causes the host to die due to the nature of a given parasite. This Dr., is the question we must first answer, then parasitic infection can be ruled out as a cause for Impairment due to a condition we call {Multiple..} Sclerosis...
Subacute combined degeneration from vitamin b12 deficiency is often misdagnosed as MS these days. There's tons of stories out there of people (usually ex-vegans) switching to carnivore or raw carnivore diet and reversing their "MS". Well either that merits further investigation (won't happen), or these people have SCD and it gets diagnosed as MS. Selma is vegan, she should consider strict raw carnivore to see if that alieviates the symptoms. There's also the issue of potential unknown/undiscovered amino acid analogues in various sources of plant protein that is poorly understood. We only just now are discovering how many there are and their role in disease. We KNOW they get incorporated into our proteins, causing malformation and all types of trouble. One notable example is ODAP from the Grass Pea. It would be wise to eliminate grains, legumes and vegetables to see if she improves.
None of my patients with subacute combined generation were vegans (because they typically take supplements). I did have one vegan patient with b12-related peripheral neuropathy. More info on B12 deficiency related neurological disease here: czcams.com/video/OPHWGDIGDLw/video.html
I love Selma!! Thank you for this video. She was the first person i could relate to with this snowflake disease
Celebrities are real people and she really shows the truth in ms and is not afraid to educate.
"Still lucky. Still grateful. I'm okay. But still a bummer".
I applied to do stem cell with Dr Burt. But now that the results are coming back that its not much better than strongest DMT... im not as willing to go through all that.
Try dalfampridine
I know what you mean I was diagnosed with multiple sclerosis in December during 2018.
How do some of you even work? When I push myself to work or exercise, I'm down for a week or so. The harder I try the more it kicks my butt.
Many people with MS experience worsening symptoms with exercise/exertion, but not everyone. It just varies.
Dr Burt did my HSCT in 2015. I’m 8.5y MS-free! 🎉😊
I'm glad you are doing well.
Ivig seems to b the only non-immunosupressive of all MS's DMTs.
I can 100% guarantee ill get stiffer limbs in public. I dont feel consciously anxious even though i have to walk with two crutches. It kinda sucks and to date, nothing has made a difference. At home its much better.
I'm on Ocrevus and I can still slowly walk so its working.
Hello MS Warrior I take the same medication although I use a cane in a row later Walker when I have to walk far but stands I was diagnosed last year in March at the age of 43 it's been one devastating thing for myself I would say I'm trying to get through the grieving stage and it's very hard but I'm hanging in there
@@naturallydope6971 Hang on there 👍. I was diagnosed at the age of 36 when I was walking normally. I am 45 now and I use a walker to get around my house. No more long walks. Ocrevus is the best they have now until something new comes around. I noticed the medicine cost $95k 😯 thank you Medicare is all I can say about that.
So sad. With all the research for sooo many years, there should be a cure by now🤷♀️
the only way she'll get better is starting high doses of vitamin D, following Coimbra Protocol.
100k of D she is 👍 good
You have ms or you don’t. There is no such thing as remission.
Switched neuro.MD our 1st. meeting he believes I have PPMS
LP coming up soon, finally submitting