"Benign" Multiple Sclerosis Explained by Neurologist
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- čas přidán 7. 03. 2023
- Some people with MS have very low disability despite having MS for several decades. Is there really such thing as benign MS? What factors increase the probability of MS being milder (symptoms and biomarkers)? Do people who are doing well continue to do well as they get older? What about the subtle symptoms of cognitive impairment and fatigue?
An explanation of the Expanded Disability Status Scale (EDSS) for Multiple Sclerosis: • Neurologist Explains E...
Do Oligoclonal Bands Affect Prognosis of Multiple Sclerosis?: • Do Oligoclonal Bands A...
Selected Sources:
Natural history of multiple sclerosis (queen square data): jnnp.bmj.com/content/jnnp/55/...
The risk of disability is decreasing in Sweden: jamanetwork.com/journals/jama...
Long-term evolution of multiple sclerosis disability in the treatment era: pubmed.ncbi.nlm.nih.gov/27464...
Benign multiple sclerosis? Clinical course, long term follow up, and assessment of prognostic factors: jnnp.bmj.com/content/67/2/148
Unsuspected multiple sclerosis: pubmed.ncbi.nlm.nih.gov/6615282/
A population-based study of multiple sclerosis in twins: update: pubmed.ncbi.nlm.nih.gov/8498811/
Studies on the natural history of multiple sclerosis--8. Early prognostic features of the later course of the illness: pubmed.ncbi.nlm.nih.gov/591609/
A Clinical and Laboratory Study of Benign Multiple Sclerosis: academic.oup.com/qjmed/articl...
Serum neurofilament light chain levels predict long-term disability progression in patients with progressive multiple sclerosis: jnnp.bmj.com/content/93/7/732
Long-term analysis of patients with benign multiple sclerosis: new insights about the disability course: pubmed.ncbi.nlm.nih.gov/33791...
Impairment and restrictions in possibly benign multiple sclerosis: onlinelibrary.wiley.com/doi/1...
Benign multiple sclerosis: cognitive, psychological and social aspects in a clinical cohort: pubmed.ncbi.nlm.nih.gov/16609...
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Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
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Music: INNER GRACE - Copyright 2018 Wilton Vought Source: Really Really Free Music Link: • Video T
he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. - Věda a technologie
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Yes! It was really me! Please do a video on old age and MS. I am now 76 and at 9 on EDSS. Not a fun place to be! Diagnosed 50 years ago in 1973, first symptoms 10 years previous. Originally told benign MS. Was able to have almost normal work career. Now: Bedrid😢den, can't walk at all, no use of legs, bladder delinquent. But strong arms and hands and can still do The Times crossword. Very little mention anywhere of old age and MS. Best wishes, Judy Graham
Thank you so much for sharing your journey and also being open about when things started to get worse. ❤ A lot of authors try to keep up appearances because they made their name as symbols for defying the odds, but it's so much more worth to learn the truth of someone's journey, even if it takes a corner we rather not have happen. I hope you can find some relief for your symptoms and are surrounded by loving care!
I was diagnosed with primary progressive at 35 years old. I am now 53, I have never been on a DMT and I have been a fairly stable EDSS of 5. Although per the criteria you presented I would not call it benign, but it’s very stable. I’m happy to help in any studies you develop.
My uncle wasn’t diagnosed with Ms until he was in his 80’s during a MRI. Never had symptoms significant enough for a diagnosis.
Thanks for the great video and the deeper look into "benign MS". I was diagnosed with RRMS at the age of 23. I started DMT after my second relapse aged 28. So far I'm doing pretty good with an EDSS of 1.5, normal brain volume, stable MRI, normal NFLs. But I'm just age 42 now. Never smoked a cigarette, normal BMI, hardly no alcohol since diagnosis, physically and mentally active, diet quite okay, fully working, studiying part-time.
Thanks Dr. Beaber! I appreciate you reading all those studies for us and trying to distill the information down for us. I am almost 57 and would consider my MS to be benign. My first discernible symptoms were in 2006. My second were in 2016. I was diagnosed in 2017. In addition to my medication (generic of Copaxone), I eat a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness. My EDSS score is 3 and has not changed since diagnosis. I would be happy to participate in your observational study.
The research I'm doing is only for our own patients because we are trying to avoid biasing the research by "stacking the deck" with people eager to participate.
@@DrBrandonBeaber I totally understand.
Perhaps I need to become one of your patients. ;)
How many lesions on first MRI?
@@dermlover1 I had one on my first MRI, it was/is on my cervical spine.
Thanks Dr. B, great video. My MS may qualify as "benign", but my diagnosis story is rather rare according to my MS neurologist. Looking back, I had my very first attack at age 19 going into my second year at college. First symptoms were significant fatigue that lasted a few weeks and weakness of my left arm that lasted less than 24 hours. I was essentially symptom free until my mid to late 20s when i started noticing more fatigue and relapse symptoms (increased fatigue/cog fog/dizziness for me). I also noticed that colors were slightly off in my right eye for a very long time before that point, but visual problems became apparent when I turned 29. I had multiple eye exams between age 29 and 34, in which the doctors did not notice any neuritis and I was still able to read the eye chart consistently based on my prior prescription. Each year the doctors diagnosed my description of "cloudy/blurry" vision during exertion/exercise as allergies.
At age 35, I was unable to read the eye chart with my right eye and that vision has now declined to 20/200 after my last relapse. However, I never had typical neuritis symptoms - it was essentially an insidious and slow decline for over a decade. I currently see the neuro-ophthalmologist that diagnosed my MS and he noted a history of neuritis in both eyes with optic nerve atrophy in my bad eye. Thankfully, the other eye has maintained good vision, but I still have visual problems in both eyes when my core temp rises.
My MRI revealed multiple lesions on the brain and spine, yet I've never had any consistent problems with mobility or numbness/tingling and remain at low disability now at age 37. I started on Tysabri about a year ago, but switched to Ocrevus about 6 months ago. Vision has improved a bit since then, as well as fatigue/cog fog, and I remain fully mobile and employed and I hope to remain this way for quite some time. I've always been an active person and enjoy being outdoors and exercising and I've maintained a healthy diet my entire adult life. I attribute my diet and lifestyle to keeping my disease in check all these years. Ironically, my diet and lifestyle has always mimicked those often recommended by most MS researchers and my MS neurologist encourages me to maintain it.
Montel Williams used to say thst about exercise...but things change as you get
older ms usually progresses.
see "montel williams secondary progressive"
Different as fingerprint autism adhd benign ms not relapsing remitting shows how behind hospitals truly are clump all together all the same false prophets only profits JohnQ also Chicago
I was told I had benign MS when I had optic neuritis in 1978 (I was 25), with no relapses or issues until 2018, when walking became a bit of a struggle and I started to use a cane. Walking continues to be my issue and I now use an AFO and rollator. I have been vegan since 2016, and exercise 30-40 minutes per day with MSGym. I retired from my job as a Special Educator in 2007 when my first grandson was born, and will be 70 years old next week. I live in New England and take 2000IU vitamin D. I have been taking Ocrevus 2x/yr since 2018. I hope this can be used in your research.
BTW, although I get your point, MS disability at 70 is not great. My life is not over and every day has new challenges that impact my interactions with family and community. I do the best I can with what I’ve got.
Doctors really annoy me at times. I was told benign too on diagnosis (I don't!) I think they tell everyone this. It wasn't until I researched I realised that they can't diagnose benign unless you have had it for 15 years. I follow the MS gym too and try to stay positive.
Thanks for sharing Joyce.
Did you take dmt's from the first attack?
@@arr2820 I did not. I went to a different neurologist for a second opinion and started Ocrevus in June 2018
@@barbaradascalos4411 you advice hsct as I know
Thank you for this informative video. Interesting to me as I am 68, recently with confirmed diagnosis. I had transverse myelitis at age 43 with symptoms of numbness over all my body and fleeting intermittent vibratory sensations in my spine. C2 lesion and positive spinal tap-dx “probable RRMS”. After 5 years of no progression, my neurologist cut me loose and said no need to come back unless you develop new symptoms. Fast forward- mild case of probable COVID, developed moderate and sometimes severe fatigue, dizziness, waves of nausea, headaches. 6 mos later finally got into a neurologist-MRI showed mild brain shrinkage and many mini light spots on the brain. My neuro exam was completely normal. Also, brain fog was noted for the past year. Now just starting on a Dmt therapy.
Thank you for another very informative video Dr Brandon, my disease is hardly benign anymore but add 56 with secondary progressive MS I'm still walking and doing physical therapy and working out as much as I can. I have to believe because my job was Physically Active and I was an avid Runner also is probably one of the one of the reasons I'm not in a wheelchair. Thanks again for an excellent video sir and have a great day.
A lot of people with MS these days use treatments not administered/acknowledged by neurologists (eg: diet, meditation, massage, vascular treatment, infectious disease treatment, stem cells, muscle-building activities). Their disability doesn’t rapidly progress, and they’re often drug-free. They’ve changed their prognosis - basically because they’re living in the Information Age and they are not fully dependent on a neurologist to provide info about a limited range of treatments options.
So true. So true. Keep staying strong.
An insane approach rooted in denial...
only 20% never progress to secondary
progressive ms...these are lucky ones...
will never progress no matter what...but
the ones who progress to spms will
progress no matter what they do.
@@barbaradascalos4411 I feel sorry for you if that’s what you believe
"their disability does not rapidly progress"
MS is not ALS..it's very slow..Feel sorry for you because Montel
Williams used exercise and Marijuana Voodoo and does not work..here is proof:
see "montel williams spms ms news today"
@@barbaradascalos4411 so 2 out of 10 are luckiest ones
Excellent video, thank you as always! I was diagnosed by accident at age 57 (now 60). I had no idea I had ms. If I hadn't had that mri 3 years ago I'd never know I have ms & my life would be much less stressful. Now I'm on a DMT that costs a lot of $, lowers my WBC & Lymphocytes, & scared of my future. The only potential symptom was vertigo 18 years ago that lasted several days. I've had 2 Neurologists since diagnosed tell me this same thing: I either have CIS or Radiological MS. If we count vertigo as my 1st attack then CIS. I have about 10 brain lesions, no spine or Thoracic thankfully. I have 12 O bands. I've been on the low dose of Tecfidera for 3 years bec the full dose lowers Lymphocytes drastically & I'm not comfortable w the safety profiles of other DMT's at my age. I've had no progression captured on MRI or in clinic since I've learned I have ms. I have zero disability. I eat fairly clean, sleep well, exercise fairly regularly. Wish I didn't know I have MS :( Video suggestion - Radiological vs CIS
It's frustrating in your age i think it will be better if they didn't tell you
Thank you for sharing these studies with us!
I would have called my MS benign for the first 20 years or so, and I'm still doing pretty well after 38 years at age 63, though my balance isn't great and I do get fatigued. I was on Copaxone for about 10 years but nothing for years now. My MRIs show significant brain shrinkage and axonal loss, but I have no cognitive issues and my MS has been quite stable. EDSS is 3.5 or 4. I consider myself healthy despite MS!
You were quite lucky
@@dragonfire3727 I don't deny it...though it would have been even better not to have MS at all! 😏
Thank you so much Dr Beaber for sharing your clear analysis of the data with the public !!! For our family it is a relief, but we stay watchful, compliant concerning treatment and control MRIs, you never know. My daughter with MS is still young. I was in great worry the first years after diagnosis, because I am a therapist and I have treated so many MS patients with very severe disease. My daughter herself never thought her MS was much of a problem, she is doing fine like everyone else at her age. Thanks a lot and go on like that !!!
@susaka2972 I am a mother of a daughter with MS as well. She was 18 yrs, 1 month old when she had her presenting symptom of optic neuritis. MRI a year later showed a lesion and she was diagnosed with MS. We are coming up to her 3rd year anniversary since the ON and about 18 mo since her diagnosis. So far, so good. It's tough to be a mom of a child with MS. We worry SO much about EVERYTHING!!!
@@debraindxb Deb inatrix, thank you for your friendly answer! I wish you all the best for your daughter and for you !!! That' s true, we as mothers are worried for years. In retrospect I think I was somehow depressed by the diagnosis and other stressful factors like work, aging myself and so on. Where do you live, I am curious ? I am from Germany 😀
@@susaka2972 Yes, I can relate. I live in the US. We were in Utah when she had her presenting symptom but now live in Arizona. I'd love to know more about your journey as a mom with a daughter with MS. I can totally relate to the depression part. I stopped eating when my daughter was diagnosed and had a full-blown mental health crisis. I could not function and barely made it through the day with my job, etc. My body and mind were in a constant panic mode thinking and worrying about the future, spending as much time as I could researching, trying to talk to people, watching videos, and trying to better understand what my daughter's prognosis could be. I lost about 5 kilos in just that first month. I couldn't think or talk about anything besides MS.
Hello, dr. Beaber!
I had my first symptoms when I was 16 or 17 (numb right leg from waist down for a month).
At 25 I had my second flare. Same leg but apart from numbness I had severe hyperesthesia so I couldn't wear any clothes for almost a month. Had an MRI scan and they found several lesions on my brain and spinal cord. Had a new MRI one year later, there were no new lesions, so they said it was CIS.
At age 35 (in 2020 - may and november) I had two bad relapses, got almost completely numb from shoulders down.
In february this year I had a new flare-up, a phone-like vibration on my left leg and weakness for a week. The same vibration has appeared on my left sholder and arm and it's vibrating even now.
Apart from these flares, I have an almost constant fatigue, numbness and tingling, muscle spasm, stiffness, nerve pain like you'd have when hiting your elbow but in other body parts.
I'm 38 now and got an MS diagnosis, new brain and spinal cord lesions and preparing for therapy.
Thank you for all of your work!
Thank you I was diagnosed in 1994 originally with RRMS and later changed to benign. I had two attacks a year apart and then went years before another one and haven’t had one since. My mris show no active lesions but I have noticed more mobility. For example I was running 5 miles for years and I had to cut that back due to a heavy leg. I now only walk and noticed it around 2 miles. I have never taken meds. So diagnosed 2 months after turning 20 and am 49 now.
will calm a lot of people. Thanks!
Love the video! Great info. Thank you.
Diagnosed at age 55 in 2020. Left work in 2023 due to cognition and fatigue but no additional flares since 2020
Great video, thank you a lot for providing these valuable information and thank you for doing researches to see if there is any correlations between lifestyle and disability. I would like it if my neurologist would tell me her assumption about what the course of my disease will look like based on her previous patients who had similar symptoms, age...
My grandpa had MS and I did not do research about it, I had bad lifestyle (no exercise, sitting in dark room daily, stressing out etc.) and my 1st symptoms were in 27. 8. 2022., I kept a daily record about progression of my desease which was about motor functions (tingling feet, muscle tone) and in 12. 2. 2023. I had my 1st relaps - optic neuritis. I visited neurologist when I had 1st symptoms and did MR head and cervical part of the spine, they found out I had lesions and I did lumbal punction whose results were good. I am waiting for interferon beta-1a and I hope I will have normal lifestyle, I'm 24 rn
Great video, thanks.
My first relapse was at age 34. It was huge with sensory, motor, gait, bladder and bowel problems. My recovery took months with no permanent disability. Even though I lacked the dissemination in time criteria, docs put me on Rebif. I followed a very heavy supplementation regime with very close monitoring intervals at the beginning. Boosted my D3, B12, calcium, magnesium and more. With some gym training, a healthy diet and supplements, I have enjoyed a NEDA period of 6 years. I even decided to discontinue Rebif in the last 18 months. One month ago MRI scans show a few new non-active lesions. I did not feel anything about the new ones.
I believe early and correct action is a major thing. Starting a DMT, optimizing vitamin and mineral levels and exercising resulted in a somewhat surprising outcome as in my case. Maybe there is a golden time window after the first relapse which may increase the chances for a milder prognosis.
How many brain/spine lesions on originally MRI at time of diagnosis?
@@dermlover1 2 spine, 6 brain, 2 thoracic
Your exercise and vitamins is not why you recovered...it is because at 34 you are still borderline young...ms really progresses age 40+ and DMT does not stop progression just
relapse...hsct is your best chance.
see "ucirvine ms reboot"
see "scalfari ms progression is just ageing"
@@mary-vy3mo you may be right. I believe what I do works for me.
Great video!! Extra props on using Kobes quote!! 😎
:)
I think I am benign. While I was diagnosed in 2021 because of a brain stem lesion, I never had symptoms before and I haven’t had symptoms or more lesions since. I healed beautifully. EDSS of 0. I do take Ocrevus now (but was on Copaxone the first 8 months post diagnosis). I’m thankful!
I should clarify that I had multiple lesions at diagnosis. But again, was asymptomatic other than the active lesion at the time.
How many brain lesions on first MRI at time of diagnosis?
@@dermlover1five or more. The doctor said several and stopped pointing them out
Well, this one was in understandable English, so thank you for that. I just turned 60 and I can confirm for you that PPMS diagnosed late on, skyrockets after 50. I guess I should be grateful for the years that I functioned, albeit rather anxious and fatigued, in blissful ignorance, and for all the improvement I've had since diagnosis in 2018, Ocravus treatment and lifestyle changes. Yeah, staying positive helps.
When I was diagnosed three years ago at age 33 it was suggested I have benign MS, but I think it was WAY too early to make such a statement. The reason for this estimation is that I had my first attack in 2013 (age 26), it was double vision that went away without steroids after 10 days, and my next in 2018 (numbness on my right side and Lhermitte's sign). Optic neuritis in 2020 led to my diagnosis, but up until 2021 I had no visible lesions in all my MRIs - my first lesion came with a relapse in 2021, after which I started Copaxone, and now (in 2023), after 10 years with MS (8.5 years unmedicated), I have two spinal lesions total. I do have annoying symptoms, mostly sensory, some bladder issues, but my EDSS is low, under 3, and I have no mobility restrictions, just walked 6 miles yesterday. And yet... since I went from completely symptom free in early 2020 to having a bunch of staying symptoms now only three years later, I'm cautious. I don't believe anyone can truly say it's "benign MS". It's just really weird that I had all these relapses and no lesions, it's the opposite of the more common many lesions and no symptoms.
Hi. A very interesting video. I am 64 and was diagnosed at around age 37. People are surprised to know that I have MS. I am functional, walk as often as weather allows, I have started doing yoga and it has helped my balance and strength. I do have the traditional fatigue. I have been on DMT for most of the time. I was hoping that the research on DMTs and age would show something positive and being able to stop after age 60 but I was disappointed. I do take D and B12. I have modified my diet and eat mostly plant based for the last 4 years. But I have been a relatively low processed food eater for a long time.
After watching I am surprised that I meet some of the definitions of a more benign MS. This could be why my Neuro seems pleased with my maintenance. To walk outside or on uneven ground I do use a trekking pole and always use a railing when doing stairs. I was Dx in 2005 at the age of 40. I was thought to have "foot drop" and did PT for that but in hindsight it was likely mostly calf spasticity that had me circumducting which caused issues with my right hip leading to replacement 5 years ago and only a partial recovery. I have remained working at a very challenging and complex job of accounting ERP System implementations (large companies/systems ie Oracle and SAP) although right now I am determining if I should keep working or retire. I have both spinal and brain lesions. I was on Copaxone upon diagnosis for many years and tried Rebif for a couple of years before moving to Ocrevus close to 5 years ago. It was at that point that my Neuro considered me transitioned to SPMS. I do try to maintain a decent diet although not fully restrictive and work with a good PT with strong neurological training. Thanks for helping me put some perspective on my condition that on average I am likely more towards a benign MS although it significantly impacts my life and decisions.
I believe I have benign. First attack (and worst) at 20-couldn’t walk. Recovered completely. Misdiagnosed until late 40’s. Medication refused. Currently 68 and progressive at edss 3. No cog fog or fatigue ever. Worked to 65. I have brain, neck, and back lesions.
EDSS 3.0 after 48 years of disease is very good.
That's incredibly lucky especially that you had an agressive first attack
Hi Dr. Beaber. Love your videos.
DX: 1982 Current age 67. EDSS 1.5
Presented with Optic Neuritis. Oligiclonal bands were found.
This was followed by
First MRI in 2006 - 3 enhancing lesions. All subsequent MRIs, I believe, showed no further progression.
@Mary Looks like he had relapses in the first 5 years after optic neuritis, but nothing noticeable afterwards. He writes there were enhancing lesions in his MRI scan from 2006, indicating that he was going through active inflammation at the time, but luckily it didn't manifest as clinical relapse (but easily could have - if you have symptoms just depends on the area the damage happens, so it's luck of the draw).
I’ve always said, (I think I’ve actually posted this before) but I believe my MS was benign to begin which was probably the reason why I kept training for so long, despite being diagnosed in 2014 (the hospital did say, even then that they think I probably had it longer, despite me going to Sunderland eye hospital years before 2004 with optic neuritis but the NHS still didn’t consider me to be a problem at the time) so I do blame the NHS for not keeping track and instead choosing the wait and see approach instead of tracking any progression and my EDSS, because otherwise how could I go from being the fittest I’ve ever been to barely being able to walk and an EDSS of 6.5 hindsight is a wonderful thing. I’m just glad they’re doing things differently now (hopefully) 🎗️
Age 59 with MS, retired from medicine 6 yrs ago due to reduced brain processing speed, optic neuritis at 39 yrs, no DMT, low carb eating for 2 years.
Fascinating + informative CZcams. So thankful for the immensely generous + well researched information you share. Happy to share the following details preceding + following my MS Dx in 2021 at 63. Pars planitis Dx: 1987 (29)
MS Dx: 2021 (63)
AGE: MS Dx 63. Now 65.
EDSS: MS Dx 0-2 Now 3-4.
DIET: 1980-2008 low-fat, low- carb. 2009-2015 Mediterranean diet. 2016-2023 healthy meals but gained 30 lbs w/ more takeout + snacking.
ACTIVITY LEVEL: active w/ children thru 2006 (50), daily 2 mile+ walks 2016 - current
SUN: daily yearlong thru 2006, 2007 inside far more
VITAMIN D3: serum level between 13 + 21 starting five years prior to diagnosis.
WEIGHT: BMI normal thru 2014, 2015 start of weight gain, by 2019 BMI 29.1
SLEEP: night owl, less than perfect sleep hygiene since 2005
STRESS: 2001- 2012 moderately high, 2013-2019 high
SMOKE: Personally never. 2nd hand until 1973 (14)
PREGNANCIES: 3 full term 1986 (28), 1989 (31) 1996 (38). Felt fabulous during pregnancies
MENOPAUSE 2016 (59)
OTHER AUTOIMMUNE DISEASES: Hashimoto’s Dx 2011 (54)
SUPPLEMENTS: Daily 3000 IUs D3, 750 mg calcium, 100 mg magnesium, Align probiotic, Tumeric w/ Curcumin + pepper extract , flax seed oil + fish oil Weekly: B12 injection
1974 (16) Mono Dx
1987 (29) Pars planitis Dx, 3 mths post nursing. Autoimmune tests negative, pars planitis self resolved.
2011 (54) Hashimoto’s Dx
2016 (59) Balance challenges, odd bilateral hand sensations + cog fog w/ Diverticulitis Dx, while taking Cipro and Flagyl. Late-onset menopause. 1st + 2nd fall, one injury.
2017 (60) Sleep apnea Dx. Leg weakness. Toe tingling, rising to waist. Low normal B12, low Vit D. Misdiagnosed w/ peripheral neuropathy. 3rd fall.
2018 (61) Inactive transverse T7 lesion Dx. Myomectomy (elevated estrogen associated with fibroids) Increased fatigue, walking challenges. 4th fall.
2019 (62) Hyperparathyroid Dx + Surgery. Fatigue significant increase, increase in heat dysregulation, start of blurring of vision.
2020 (63) Breathing challenges. abnormal phrenic nerve EMG. Tremors, writing + talking challenges, 1st immobilizing Uhthoffs experience. 1st brain MRI (12 lesions) Lumbar puncture (13 oligoclonal bands)
2021 (64) MS Dx. 1st post MS Dx relapse.
2022 (65) Hypothyroidism Dx + Synthroid start. Tysabri start. Stable MRI results I’m participating in research at UCSF (microbiome + CSF) Cedars Sinai (MS-ReBS + Multiple Sclerosis and Neuroimmunology Repository), and Mayo AZ (A Biorepository for the Center for Multiple Sclerosis and Autoimmune Neurology). If I can ever be of help to you, will be my pleasure.
was diagnosed in 2011at the age of 49 (female), I was on copaxone for 3.5 years and due to severe skin reaction, had to stop. I haven't been on any dmt ever since. My symptoms are mild such as fatigue and muscle spasm. I just feel grateful for being benign this long however I won't be surprised if that changes.
First symptom at age 30, double vision and numbness on left side of body. Was told to wait and see, no medications and recovered after a month or two. Next symptom 6 years later, numbness on right thigh which triggered official diagnosis and started Copaxone immediately. That was just over 8 years ago. I am now at 15 years since disease onset and almost 45 years old and have not had another attack and have EDSS of 0. Brain lesion load has not changed since second attack (about 5-7 of them and most of them got smaller) and brain matter has also not decreased. At diagnosis, I also changed my lifestyle quite significantly and altered my diet, began exercising, and began a more rigid vitamin D regimen.
Waiting for diagnosis: MS-Like episode with onset of numbness in toes and then fingers, followed by vision loss and discoloration in left eye. Then fatigue, small smasms here and there. Constipation for 2-3 days. Peaked in 2-3 weeks, started improving after that. Now Its been two months and i'm still recovering from vision loss and still feel some numbness/swelling in my hands. All other symptoms have gone away. I never lost balance, strength, or coordination, even if at times it felt like I was.
I just want to point out my situation in case it can help. Was diagnosed in 2014 after an episode of optic neuritis. 10 years later im a fully functional marathon runner. I did start tysabri 2 years ago as a precaution and take extremely good care of myself (nutrition, sport, no alcohol, no smoking etc etc, you know the drill)
Thank you for this informative video. Have you observed commonalities among patients who have benign or mild MS such as similar diets, exercise, or other factors?
You can not control this disease with diet
and exercise....hsct is best chance.
watch "60 minutes Australia ms youtube"
No it would be in their genetic make up not in diet/exercise.
I love your videos! I especially appreciate you saying the number of lesions does not necessarily correlate to high disability accrual. That stresses me the most with my diagnosis, and it’s always in the back of my mind. Do you have any thoughts on choosing a treatment option based on your genes? Thank you!
I follow a lady on TikTok who has all sorts of mini-lessons regarding gene editing using the CRISPR technology. I have asked her if there are any plans for rolling out treatment for MS using gene editing but I haven't heard anything back
@@debraindxb I’d love to know more! I’ve read a few studies on how people with certain genes tend to respond better to Copaxone. I’ve sent my blood off to get my genome sequenced. What is the lady’s name?
@@marissahayes6147 Hi, there. Sorry, I didn't see your reply until just now. I forget her name but she runs The Cure from CRISPR Classroom. She was in a live session last week and I came in just as they were talking about MS. I was like, "please God tell me there's something in the works" and she referred me to their newsletter that would be coming out the following Sunday (last Sunday). I actually subscribed to getting the newsletters (it's like $4 a month) just so I could get more info.
Anyhow, hoping to read about some new treatment, it was just a short summary of the EMBOLD/ATA188 trial. CRISPR/gene editing is used to get the transferred T cells ready so that is where CRISPR comes into play. The same ATA188 that had really high hopes and huge $$ investments but had somewhat inconclusive data with the most recent update. Anyhow, this is what was in the newsletter.
4/ Atara Biotherapeutics thinks that to cure MS, we may have to stop EBV. They are running a Phase I/II clinical trial to test their leading MS cell therapy drug candidate, ATA188, in people with MS (NCT03282826). Data from this trial are expected in October 2023. So we’ll keep you in the loop.
How does ATA188 work? 👇🏼
ATA188 is made of T cells obtained from a healthy donor previously infected with EBV. It specifically includes a population of T cells primed to recognize EBV to launch an immune attack against infected cells. These T cells are then given to the MS patient and are designed to destroy EBV-infected cells and potentially slow or halt MS progression.
Purely science fiction for now...chemo
is best current treatment...hsct
watch "60 minutes Australia ms youtube"
13 senelik ms geçmisim var benimde beynimde çok sayıda plak var yürüyebiliyorum agrılarım var ilaç kullanmıyorum keske bu hastalık olmasaydı
I was dxed in 2004. Took Rebif injections 3x a week for 8 years. Was doing great know probs. I stopped my meds. Never had a flare up until last week. Stay on your MEDS. On 21st i get results an prob a treament plan❤❤
This does happen sometimes. Long term remission doesn't necessarily mean indefinite remission.
I was born in 1957, was diagnosed in 2016 w/ one tumefactive as well as multiple typical tiny lesions. After MRI (indication: Lhermittes sign) at 1st appt, neuro said she thought I had had the disease for a long time (couldn't use a screwdriver on the ranch, so used my drill but then I couldn't use a hammer so I bought a palm-nailer but the 3rd year I couldn't even hold the drill and was tired of complaining of Lhermittes sign w/ PCP. I thought most of sx were just due to aging. Most of the time now, I can hide my original problematic sx of the first 7 yrs and I have good days with only balance issues late in the day or when stressed. I hope this info is helpful for you. I was determined disabled in 2017 (SSDI) and have had to use a cane since diagnosis.
I watched an Unsolved Mysteries show and a murder victim that was autopsied was found to have MS. This was a man in his 40s or 50s but was not a diagnosis he knew of according to his family.
Outstanding ❤
Thanks
My neuro hasn't called it benign, and I don't know what my EDSS is -- I'll ask next time I go -- but my MS has always been mild. I'm 68, diagnosed at 40, symptoms (occasional numb, tingly feet) began at age 28. I've never been on a DMT, have no disability though I have a fatiguable left leg. I walk, bike, garden, practice yoga. Sometimes I get foot/calf cramps, usually at night, and my bladder isn't what it used to be. Otherwise I'm hanging in there with little change over time.
I was DX 26 yrs ago. No symptoms now at 58 although I’ve had every one. I’m beginning to think all of my lesions are due to hitting my head so much from all the times I’ve fainted when I was a child 😳
I’ve been told I have benign MS despite being on my 6th drug for it with constant symptoms. Some neurologists like to downplay it as long as you don’t need a cane or wheelchair.
Had my first relapse with opt. neur. in 2015 and the second in 2022. EDSS 1 and now Iam taking ofatumumab because Iam afraid of getting more worse and because the efficacy seems to be very good.. Hope it stays quiet and kesimpta does it’s job well.
Thank you very much. I was diagnosed 25 years ago when I was 28 with my first child. ( I had two more kids). Haven’t had any treatment yet because of the “benign” ms maybe. I tried vumerity for thee days and felt miserable. Last year I had to stop it.
Correction , I was 23 when diagnosed.😊
Had my first symptom in 2008 (Optic Neuritis), then my 2nd in 2023 (a painful itch below my right chest). Lesions on brain and small one on spine. So far no other symptoms and going on some experimental drug.
Hi, Great Video. I have been having symptoms for 1-2 years. Off and on. Recently I had a brain, c spine, thoracic, lumbar and sacral MRI spine. Scanned with 1.5 Tesla without contrast. All came back normal with no evidence of lesions of demyelination. My dad has MS. I wonder if the scan was strong enough or if something was missed or if this is all in my head now, what do you think Steve or should I rule out MS? Thanks
Why was it done witohut contrast? Did you present to the neurologists without symptoms or with symptoms?
Hi Dr. Beaber. I would say that I have benign MS. First attack at age 30 with optic neuritis and recovered in less than 7 days. My next attack was 17 years later. I was very active initially and have become very sedentary since changing jobs in 2018. I can send a message with more details if interested. Thanks for this video!
Were you ever on a DMT, if you don't mind me asking? If so, which one and for how long?
What happens if we have matching OCB in CSF and Serum? As i'm having all the symptoms of MS but according to my doctor my OCB test is negative. I have inflammation lesions in my MRI
Dx RRMS 12/15/22 at 45. Still not on a treatment due to my living situation. This summer, I couldn’t bend my knees when it was hell hot & humid, for the first time ever. It sucked. My legs are sooooooo freaking bad OMFGGGG 🤢😢
My son had the first optic neuritus at 17, he wasn't diagnosed until he was 28. Ten years later he was diagnosed with tumefactive MS. He was geting Tysabry for 9 months only then he choosed to stop
At the same time; He was also diagnosed with CCSVI , bilatral yugular stenosis and refux of blood to the brain; for that he had the balloon venoplasty by a interventional cardiologist.
30 years later Since the first optic neuritis he has had no relapses and is not taking DMDS. He Can walk without a cane but he preferes to use the Cain because of the let foot drop
Our question is is: should he star taking DMDs or just wait?
Türkce ye çeviremiyorum sadece yorumları translate yapabiliyorum videoda ne anlatılıyor yoruma yazar mısın
Hello there.
I have MS from 2011. when I was only 16 years old,now 28 and on EDSS scale I am 0 but with all kind of symptoms from time to time.
Last MS lessions in 2017. in cerebellum and with symptoms like nistagmus or with "Y" ...I dont know exactly how because I am not from English speaking area but I am on Rebif for last 2 years and I want this to stay exactly like this but I found out that I can't learn anything new because of headaches and some weird feeling in my head when I try something like that.
I dont know how far I can walk because I broke my clavicle bone last year,now my knee had a procedure but for now at least 10km per day...previouse was +-30 but that because of other problem,not because of MS.
i was diagnosed with MS 30 years ago be an MS specialist, every test possible was ran but not until a spinal tab was positive was oligoclonal bands was I informed. I was put on interferon/beta-1a. had a reaction and was taken off it. I moved and I never had a neurologist since even listen to me let alone get my medical records. I had this MRI done finally in 2019 and despite the radiologist reading it saying a demyelinating disorder could not be ruled out the neurologist said no signs of ms are detected. So, I'm under no neurologist at present and just wonder if you'd take a look see what ya think of these MRI images of brain and spine and tell me if I do need to be under a neuro or not. Just looking for your opinion.
I can't give you personal advice here. Many people are misdiagnosed with MS due to non-specific MRI lesions as explained in this video: czcams.com/video/GNnba5HVvdY/video.html
Do you have a video on DMDs drugs?
Yes. Here is a playlist you may find useful: czcams.com/video/D4uRp4QKb-0/video.html
Is it possible for Benign MS diagnosis getting missed in mid 30’s and 40’s with symptoms showing up at 60? Are brain lesions ALWAYS seen? Can they be missed or not there?
10 or more years from my first symptoms and I'm still working, walking without cane, going on hikes, no falls, continent of bowel and bladder. I guess it's benign. It doesn't feel like it when I'm crashing everyday by 6PM though.
I hear you! 6pm is crash time!
Diagnosed with "mild" MS at 56 after numbness and loss of sensation in left hand. MRI showed lesions. Took Kesimpta for 7 months but stopped after negative lumbar puncture. Nurelogist wants to take another MRI. Still have hand symptoms 1 year later. Sigh...
I'm an 8 on the EDSS and I'm only 29 so I'm an exception unfortunately.. it also seems that I have active SPMS just to put it out there
I was diagnosed with ms when I was 13, my left eye went blind for a couple of days. Now I am 35 and had only a couple of relapses, not very strong, I have been talking fingolimod since it was made. Can I tell that I have a bengin ms?
i ask myself in which year or century an acceptable drug will be available, and its not possible to make the eye damages undo
The cognition tests and mobility EDSS scores don’t allow for meeting the objective from the patient’s perspective. EDSS must be “walking” yet some can move efficiently hopping , tip toe, or running. Neurodivergents with MS must test take as a neurotypical and could do poorly upon examination
There is also the subjectivity of the tester A patient on paper may be a very different performer IRL Results of studies may bring some hope, but can also bring despair if one feels they meet that criteria for deterioration
You are right that the EDSS does not capture cognitive function and other symptoms such as fatigue well. Unfortunately, EDSS is the outcome used in these studies, so I have little choice but to use it.
Great comments section.
Comorbidities also play into advancement of disability and vice versa. The more health issues I've has, the more they all affect each other.
Yes. You are right.
It seems to me that people whose first symptom was optic neuritis fare better with MS and are more likely to be the ones with 'benign MS' compared to those whose first symptoms were something else.
This is, on the average, true.
Just got the results of my lumbar puncture. It showed OG bands but no proteins. My neurologist has now diagnosed me with a very slowly moving PPMS. She's actually reluctant to put me on a DMT given I've not experienced any disability. Would we call this benign MS? I had a thyroid biopsy (5cm nodule found on MRI) and while I don't have the results yet my neuro was quite keen for me to advise of the results. Could thyroid issues encourage cervical spinal cord lesions? I also have two herniated cervical discs but not in the exact location of the lesions.
Cervical lesions are very common type in MS..Thyroid issues are caused by EBV just like MS is.
Some just have very slow moving ppms...that does not mean it is benign...
Ocrevus is only partially effective for ppms..so the earlier you start the better..as
once it starts to progress it becomes harder
to put the brakes on it.
@@mary-vy3mo interestingly they are reluctant to put me on ocrevus. This is the Barlo Center in Toronto, thr best known MS clinic in the country. I actually have wondered how confident they are in the diagnosis.
I'll add to this, i've been reading that the older you get the more reluctant some neuros are to use a dmt like Ocrevus given the B cell depletion. I'm 54 so I wonder if they worry about me being more susceptible to respiratory infections etc.
I had optic neuritis about 8 yrs ago and my MRI showed some lesions, at that point my neuro said its CIS lets wait and see what happens long term. 8 years later i had vertigo, done MRI and it didnt show much change, but my neurologist ordered second one for my spine, neck and head just to make sure as she suspect is MS. Still waiting on the results. Never had any other symptoms and im unsure what to think.
Hopefully the MRI of your spine comes back normal.
@@DrBrandonBeaber It came back with 2 lesions, so neuro suggested I start Dmts… absolutely terrified from all the side effects they cause 😢
I have been told I have benign Ms. symptoms started april 22 with a lightly numb face. I am 58. Just about to start my first DMT not sure which yet. Two brain lesons none on spine. Postitive LB
I'm 47. My symptoms started like yours in june 22 with a numb right side of the face. I had two lesions on the brain and negative LB. My DMT is Tecfidera.
Hi Dr Beaber, I'd be happy to talk to you about this, but I don't want to do it in a public forum. I am a Kaiser Member and your staff is welcome to contact me. (I'm in Northern Calif.)
my middle sister only has 3 lisons on her brian they say its the dawson finger that slighting enhanced that gave her a diagnosis she still lives life pretty decent works walks fine no assistance and cignisition is fine she barely feels her symtpms when she tells me mainly the fatuge and some slight dizziness she got diagnosed around 2014 and she hasn't had any relapse shes on tecfadera like me
I just want to know whats wrong with me ! 4yrs now . i'm 57 and have a hard time typing...
I have 2 cervical lesions only and no disability. Has anyone studied any of this in cases without brain lesions? I'm actually getting a lumbar puncture in 3 weeks to help 'solidify' the diagnosis as my blood testing is painting a picture of possible B12 deficiency. Unfortunately the blood testing was done after I started large supplementation of B12 and folate so I'm going off of the results for MCV, MCH, MCHC, ALP and homocysteine.
What symptoms did you have?
@@dermlover1 tingling in hands and lips. Lasts about 3 seconds. Used to happen 3 or 4x a week. Now happens 2 or 3x a month. I have some noticeable back issues, a few herniated discs degeneration etc so that could also be the source of the symptoms. Been getting therapy lately so that could be mitigating the symptoms as well.
Cervical lesions are among most common lesion location in ms.
@@mary-vy3mo it's interesting that I have two herniated cervical discs though.
Lesions in CNS and herniated discs are different issues.
But does age of onset matter? Im 48 and had my first flare up about 18 months ago
Disability is more associated with absolute age than duration of disease. Have less disability at a more advanced age is favorable.
I actually know I can't walk 100 meters unassisted, Even with a walker I'd have to sit down way before that. I'd take my power chair. I do hardcore yard work. I can use the 18v chainsaw and 40v pole saw, weed eater, and lawnmower, but lawnmowers act as walkers. I've rebuilt my strength but my legs can't carry me far. I do all the heavy lifting at home. I broke my spine and hardware bi laterally in 2019 and have pseudoarthrosis, so if I had MS it would be hard to tell though I have had many of the symptoms come and go, including the hug. Long before I broke my spine.
You can still get a brain MRI to see if you have lesions and together with a spinal tap that could help you getting a diagnosis, despite your spinal problems making it hard to tell symptoms apart. All the best!
@@DRT813 I know, but I got diagnosed with Pulmonary fibrosis at some point around 2019 and only now found out when I got an upper GI. It was written on my discharge papers after getting a simple upper endoscopy under problems-active- pulmonary fibrosis-stroke, etc. I was floored as you can imagine. Nobody ever told me so I never sought help. I just figured smoker's cough. I've smoked for 49 years. I'm not going to burden the system with tests. Whatever will be will be. I did have muscle pulling in my eye the other day when I moved them. First time in a long time. Always the right eye. It also always flutters when I close it tight. I did have or maybe still have glaucoma, but I know the muscle thing is a sign of MS along with the shocks to the eyeball I use to get daily but now are less frequent. The last year has been painful in the lungs. Injuries occur with severe cough. I'm still mortified and accepting but shocked they forgot all about me, diagnosing something so critical as pulmonary fibrosis and it just must have slipped their minds with their busy schedules. It's too many comorbidities. I know when to be at peace with whatever happens and that time is now and I will live and laugh and work until I fall out on the ground doing some form of work like my uncle I guess. I admired the fact he died feeding chickens. Always working. It's good. I'm not gonna chicken out. I already refused spinal surgery because they made me wait 8 months before offering but I knew they'd just keep making roadblocks. I do wonder, could olfactory hallucinations of smelling rubbing alcohol when I first start to cry and tinnitus that sounds like Katydids off in a field be signs of MS?The tinnitus is not unpleasant. It is not bothersome. I actually enjoy the continuous loop of sound. I've had both of these chronic symptoms for around 10 years. Other comorbidities are ulcerative colitis, huge hernia, hepatomegaly, GERD with erosions in esophagus, NAFLD, hypothyroid, venous insufficiency, and early atrophic left kidney which ultrasound technician had trouble finding.
I appreciate the video Dr. Beaber, I don’t believe that Benign MS is a meaningful term. Clearly MS is a spectrum disease and low disability is a possibility … I believe you mentioned that the disease is more mild in nature in recent years possibly due to the widespread use of DMTs or increased diagnostic sensitivities. Could you elaborate on studies that show the value of long term utilization of DMTs or highly effective DMTs and disease progression?
see "how ms patients aquire disability"
Says dmt only stop progression to edss 4
by 3 years.
Agree with your assessment on male vs femaile differences in disease worsening or that the disease is "worse in men" (although I am slightly biased as a male with MS). I would like to think there are other factors involved. First off perhaps it's because men are less likely to go to the Dr. for help for some reason. Perhaps the cultural norm of men needing to be "strong". This would mean that men are on average likely to have a later diagnosis and more progression than women. Next men smoke /drink more alcohol than women on average, perhaps also a cultural thing. Also perhaps men eat a worse / more unhealthy diet on average (i believe there are some studies on this also). So across the board there are perhaps lifestyle choices that average out to a worse outcome for men. I would like to think there is more nuance / variables not taken account in these models.
Try not to look at criteria that pigeon holes you in to what course your MS will follow. Professor George Jelinek was 45 at diagnosis, is male, didn't eat well. He ticked the boxes to say an unfavourable outcome. That was in 1999. He has kept in good health all this time! Stay positive!
@@hcm444 Thanks Helen, I try to :) statistics can be quite scary though as it just pure hard scientific evidence of a probable life outcome. Taking my meds and staying as healthy as I can though - I guess time will tell.
@@__Wanderer If you haven't researched George Jelinek he is worth looking up. Trevor Wicken - the MS gym is good too. I researched and wanted to know everything when I was diagnosed. As you know there is alot of scary stuff and misinformation. Now GJelinek and T Wicken are all I follow. They are informative and positive.
Oestrogen is seen as a neuro protective chemical
In my opinion I dispute that MS can truly be benign after all the definition of benign is “not harmful in effect.” I can’t imagine that can apply to a disease that damages the CNS. As you say many people have invisible symptoms and the EDSS is very biased towards mobility. It is heartening to think that DMTs are changing the natural course of the disease.
You are right. It is very difficult to define "benign" which I tried to highlight in this video. Surely, a 50 year old who can walk two miles but is unemployed due to pain and cognitive symptoms cannot be said to have benign MS.
@@DrBrandonBeaber absolutely agree!
No,more profitable Ocrevus poison treatment wrong diagnosis 2001 when company man neurologist bought paid like Dr.Burr 1st HSCTclinic &patient Putin thanks 2Selma Blair&ABC Linda or Robin Roberts company man wannabe Dr.Burt in my opinion Cancer Treatment old as Bidenomics Autism txts speaks evil as all the same Benign Relapsing
I want to stay benign as long as possible maybe by that time some effective anti-neurodegenerative DMTs or regenerative therapies will have come out.
Amen to this.
Get hsct to stay benign...
watch "60 minutes Australia ms youtube"
Please always go to a lyme literate doctor and get a lime test before you go to a neurologist the symptoms overlap Lyme disease with MS. Some of the good tests are vibrant, MDL, and the best is igenex
commentary on this topic in the following video: czcams.com/video/Ak04PIcxbTg/video.html
It doesn't sound completely benign, just not devastating, which is true of a large number of cases.
Just because you can walk, doesn’t mean your MS is not bothering you or causing you issues.
Indeed
Unlike majority vs minority movie with Jim Carrey reality as Liar Liar "I Can't Lie"
Finally diagnosed relapse remitting believe benign 20yrs after should've been diagnosed was still union shop steward mentor teaching new drivers AudiHD only took almost 50 yrs to self diagnosis Ocrevus treatment was poison hindsight fright reality sadly unworthy HSCT Northwestern Medicine DR.Burt only rediagnosis
4support 🙂
* Discrimination
Please look into the claims by Palmer Kippola. She's written books and gives talks on the internet about having reversed her MS naturally. You and I have communicated about her before, and you stated that you weren't aware of her. She claims to be back playing sports... Is she selling us some truth or bs? It would be kind of a disservice to us if you don't at least take a look into her MS claims and success stories.
There would be no way for me to verify this type of claim.
* Autihd
I wish there was this kind of data for my condition, NMO, we are pretty much in the dark when it comes to numbers like this.
There are some observational studies, but they are greatly outdated because treatment of NMO has improved dramatically. Many people with NMO who are not having attacks are extremely stable, and progressive disease is rare in NMO.
Why is this disease so inconsistent?
Hey Doc, Can I talk to you on email.... It's urgent.
Well mine is very aggressive.