Data from 46,000 People with Multiple Sclerosis Explained by Neurologist

[@marybethcully5883]

Thanks…I really appreciate how you provide specific data without the doom and gloom. I am a long termer that uses a rollator to walk long distances and I’m 62, and still takin g a DMT, so obviously not one of the lucky ones. But there are so many other things that I do as well, exercise, healthy diet and staying mentally active that helps too. When I think back, as there weren’t DMTs when I was first diagnosed, but the emphasis to move exercise and eat healthy eating wasn’t as prevalent either…. I plan to do whatever I can to be as healthy as I canfor as long as I can and I’m grateful for what I have right now.🤷‍♀️

[@AaronBosterMD]

Great video, thank you for sharing this data. Excellent explanation of the limitations and potential value to clinical decision making.

[@roberture5903]

17:52 17:52 thank you for the excellent information Dr Bieber , the fact that I'm getting older with more disability progression it makes sense that the medication is a bit less effective but still keeping the disease from getting any worse .you touched on something very interesting also because I believe luck is a big player .

[@k3of5ks]

Interesting. Diagnosed this year at 66yo with symptoms for 15-20 years. Not interested in DMTs due to info like this. Instead are drastic lifestyle changes that include diet, PT, sunshine and exercise. I appreciate you Dr Beaber.

[@EvenSoItIsWell]

Good on you for making changes! I am doing a combination of DMT and lifestyle changes. There is a much better understanding of how diet and lifestyle changes can help in recent years.

[@colleensmith3374]

Wow! We’re lucky to have you Dr Beaber. Such a plethora of information here! I’m gonna have to relisten a few times to take all this in. Much appreciated.

[@DrBrandonBeaber]

Thanks. This really is a tremendous publication, and I credit the authors for putting all this data together. Unfortunately, research like this typically gets very little press.

[@uptoeleven]

This is great stuff, thank you, I'm gonna have a play around with that tool. It would be handy if the tool also shows the statistical risks from not taking any DMT (I don't know if it shows this or not). I think a lot of MS specialists underplay the effects of MS as it's so variable, which can lead to patients being under-medicated. This coincides with the idea of lesions "healing" or "clearing up" - they no longer show up on a scan but on autopsy it's clear the underlying nerve is still destroyed, even if it's "healed". Hence why expanding lesions are such an issue.

[@DrBrandonBeaber]

I do agree with you that because many people with MS are stable for short periods of time (like 2-5 years), some providers can greatly underestimate the potential for MS to cause disability over very long periods of time (20-40 years)

[@stonz42]

Thanks Dr Beaber. This was an interesting topic. As a lifetime student of mathematics I also remain skeptical to data modeling. The phrase “lies, damned lies, and statistics…” comes to mind.

[@DrBrandonBeaber]

:) Is there any particular aspect of the data you would be skeptical of?

[@stonz42]

@@DrBrandonBeaber The concept of a data modeled "placebo" is one aspect where I'd take it with a grain of salt because "placebo" 30 years ago may not be the same as "placebo" today due to advances in nutritional studies relating to "MS diets". Some patients nowadays manage their disease with diet, which was likely unheard of 30+ years ago. Also, the variation of each individual trial leaves some level open to interpretation, but I believe the purpose of this model is to remain rather general based on educated guessing, so one must remain somewhat skeptical. There's so many other variables (nutrition, lifestyle, etc.) that may skew data long term. For one example, diagnostic criteria may be more encompassing now and result in more MS diagnoses of milder disease, which would not have been counted in older studies. CIS comes to mind, which may not have been diagnosed as MS years ago (likely my case).

[@Rene-uz3eb]

Great data. So if people tend to get better and have lower relapse rates 5:40, why then do clinicians say it is a progressive disease (fear mongering to get on therapy cause god forbid it'll get worse otherwise)? 13:41 this graph screams do not get on MS therapy. Esp given the ineffectiveness and disease getting milder over time data points. I really appreciate you putting out the true data despite the implications. Thank you 14:50 basically doubling mortality rates in all age groups

[@DrBrandonBeaber]

The term "progression" in MS refers to a slow and insidious worsening of symptoms, very different from a relapse which causes relatively rapid worsening. Although relapses and new MRI lesions decline with aging, progression can [and often does] still occur.

[@thegoodolvet5586]

Great Video! Really appreciate the information and how you present it!

[@DrBrandonBeaber]

Thanks

[@EvenSoItIsWell]

Thanks Dr. Beaber! I was particularly interested in the risk for infection. Is there similar data out there for other troubling symptoms like fatigue, cog fog, and depression?

[@ahmedfowad6882]

MS affects different aspects of life. Your videos can include 1) effects on professional life. Changes needed in professional life. In my professional life I am particularly worried about cognitive decline. I know you have talked about effects of MS on cognitive function. However different professionals can be affected differently. 2) effects on social life. 3)effects on communication skills. 4) effects on private life which can't be openly discussed. 5) how to cope with mood changes.

[@DrBrandonBeaber]

I do have one video on cognitive symptoms and mood with a neuropsychologist, professor Anthony Feinstein: kzbin.info/www/bejne/l3zUip2ld8ypd7c

[@Melanie-uz9mi]

I am confused between the paleo diet or keto diet and the OMS diet. They are very different, which one is better?

[@raffael7952]

thank you, very informative and interesting!

[@mikerenda3132]

I’ve been on Ocrevus since 2017 I was on the OPRA study with Columbia Presbyterian in New York. I’m 58 now my MRI show no visible signs of new lesions. And now I’m in a wheelchair. I have progressive multiple sclerosis. Is it because PPMS is difficult to detect progression in MRIs? I also got Covid in late 2022, which worsen my condition with my legs. My latest MRI still show stable. .

[@kyleburgess8439]

I also have PPMS with clean MRI. But over the last six years I have progressed in disability and just like you, covid took my legs away.

[@mikerenda3132]

@@kyleburgess8439 i’m doing so much physical therapy and I still can’t get it back. I’m doing everything right eating exercising. I’m so glad that you reached out to my comment let’s just hope for something down the line. Thank you for reaching out.

[@DrBrandonBeaber]

Sorry you haven't had great results. Unfortunately, it is common for people to have progression despite stable MRIs. One theory explaining this phenomenon is known as "smouldering multiple sclerosis" explained in this video: kzbin.info/www/bejne/i2WZmax9oN-aoa8 This video speculates about some other theories: kzbin.info/www/bejne/goKvg3ytgZKUaMU

[@Roadwaymike]

This is Rad! Thanks Dr Beaber for your badassness. This warrior appreciates your dedication!

[@DrBrandonBeaber]

:)

[@Helloimjennifer_]

Would it be wise to maybe take meds earlier on (younger) and then stop them when older?

[@MohammedNomer]

WHAT WOULD I HAVE DONE WITH OUT UR VIDEOS THANK YOU SO MUCH !!!!

[@ernestworthing1531]

Thanks for all your work. Is the cited research on Nfl up to date? I believe Amit Bar-Or has more recent work, looking at non-relapsing progression (DOI: 10.1016/j.ebiom.2023.104662). Relatedly, I have a video topic idea/suggestion!: The experimental use of Nurr1 in MS, as explored in Francesca Montarolo's work.

[@ocrevusocrilizumab4558]

Quoting from your video on the pathology of ms "Perhaps we could say 'What are these lymphocytes targeting ? What are the antigens and other aspects of these immune cells ?" This goes to cause rather than treatment. Would this be suitable for a video ?

[@DrBrandonBeaber]

There is strong evidence that MS is polyantigenic (meaning there are many targets). This is based on lymphocyte profiling and characterization of antibodies in the cerebrospinal fluid. It might make for an interesting video idea, but I would have to do some research on it.

[@ocrevusocrilizumab4558]

Thanks Dr Beaber. But you are smart enough to research, even though time may be required, and for us your explanations do give the information in an understandable way so we are very grateful.

[@pedrorodriguez7122]

What infections? Specifically.

[@KlokanIngr]

Hi, I think that there is an error in the app or data. If you choose age 44, remaining life expectancy is 33 years. If you however choose 45 or above, there is a huge step to 18 years.

[@RickeyBobby-x2e]

The more I see my comment being systematically deleted, the more I believe I figured out the disease Pathology. ' Its just that simple. So delete away, for I'm feeling almost fine, while these people continue suffering. ' 😮

[@DrBrandonBeaber]

I'm not deleting your comments, and I do not have any comments in my "held" comments community tab. KZbin will block comments for various reason including containing links to certain webpages.

[@RickeyBobby-x2e]

@DrBrandonBeaber Understood, but and since they appear to be keeping real-time knowledge from you, Your Medical data unfortunately is becoming skewed on a quantum level, as more and more people, are quickly becoming aware, that The MS Elephant in the room, can be fought. Me? From the way I feel now because of the approach and method I am using, as of November, 2024, I , am [only in Post Disease Recovery Mode ]. - Fact. The Rationale: I knew I would have far less time before the disease would do to Me, what it did to our MS Chapter Office RN, what MS did to my friend and Mentor, who had MS for years; dying in November, 2017, and I knew from concrete evidence, I'd surely be next, but,., I'm a little brighter than these smart professionals within my circle, so I Focused, Redoubled My Efforts, and as of November, 2024.., I'm merely addressing the damage done to me since 2016 diagnosis. No DMT's, no nothing, just a 160 IQ, and a Mother who was a Research Analyst. Now: while Everybody else just sits, cries, and surrenders out of hand to just about ANY complex issue for Them, I'll settle for an Antivert, a daily Clemestine pill, my daily Augmented Tincture Therapy, get up, start my day, and Wonder What All The Fuss Was All About. ... I feel fine. Thank you. ☕

[@Alan01]

I was unable to find a link to any app. Is it still working?

[@DrBrandonBeaber]

Here it is: bielekovalab.shinyapps.io/shinyapp/ Click risk/benefit

[@dominicheinz3255]

I would not overrate significance, because of the high number of cases

[@DrBrandonBeaber]

I'm not sure what you mean.

[@dominicheinz3255]

Statistical significance is a result of a large number of cases.

[@ahmedfowad6882]

Thanks for another great video. As far as suggestions are concerned for topics for new videos, I think you have covered many aspects of multiple sclerosis. I have not seen all of your videos so suggestions may include topics you have already covered. I will request videos on: different or unique presentations of MS. When I had my first presentation (though I can't call it be unique) i-e, asymmetrical weakness of legs. I was considering MRI Lumbosacral region and took time for NCS lower limbs. Neurologist thought it be a variant of GBS in which reflexes are preserved. However he wisely went for MRI Dorsal spine. I understand neurologists see many patients and every patient has different course of disease. So you would have seen many patients with different presentations. So it can be a recall of good collection of different presentations...

[@DrBrandonBeaber]

Typically, guillain barre syndrome is very symmetrical with loss of reflexes.

[@JoscelynGallas]

Thanks Dr Beaber are there any studies on smoked foods, smoke fires, smoke in general? I know my first big episode was during forest fires I thought it was based on Covid or the fires before my MRI and formal diagnosis. But, I notice terrible differences when exposed to smoke from camp fires esp. and I grew up for many years in Northern California wood fires in most homes; needless to say I can build an amazing fire 🔥 if needed. When I eat smoked foods or get near camp fires I get really bad symptoms afterwards. Maybe its just me but, curious to know if studies regarding topic. Now closer to winter time if I should skip fires in our real fireplace and avoid them really so I can tell my husband he loves them. I know weird question its just something Ive noticed so maybe I am not alone? I hate being near smokers too it seems to make everything worse for me at least.

[@DrBrandonBeaber]

One old hypothesis was that smoked meats could contribute to the pathogenesis of multiple sclerosis due to the presence of certain nitrate compounds. This was based on epidemiologic evidence that MS was more common in areas where smoking meat was common such as the Faroe islands. As far as I know, there is no strong evidence for this. Smoking cigarettes is weakly associated with increased MS risk, so presumably any smoke inhalation could be harmful.

[@andrewdawidek6547]

I had an episode of systemic polyneuropathy last year, and fortunately, there’s been no further progression. My MRIs were inconclusive, so the chances of me having MS are rather slim. Since then, I’ve been watching your content about MS, which I continue to find it entertaining, even after concluding that my chances of having it are quite low. Thank you for creating this content.

[@RickeyBobby-x2e]

Cc: FYI/FYR: CC: FYI/FYR: CC: FYI/FYR: November 12, 2024. Progress notes: The Rationale: Here, when I use Nicotine lozenges, they tend and do make me very dizzy, but if and were I to take Antivert, the dizziness symptoms, along with the benefits of my augmented Tincture, would likely work in the opposite way, ... in the same way, as to both Mitigate, Abate, and address the problem Dizziness, MS often causes; - all while adding the Clemestine in, say it's liquid form, (I've found some), ..to the Liquid Tincture, taken now 3 xs per day. I am now using.., " The regular and provided 1 ounce eyedroppesized eyedroppers that come [ in the 2 ounce bottles]. * I take 3 eyedropper squeezes; about a Third to a Quarter full when you squeeze for the liquid. I take it this way: I take: post 1.) Breakfast, 2.).Lunch, and lastly 3.) Dinnertime. All of this in order to address the MS typical symptoms caused by the microscopic, difficult to detect, that do hide inside red blood cells, that are obviously changing their pedestrian and normal red blood cell functions and behaviors; see book, Parasite Rex; ...eating /.feeding on the fatty and obviously Tasty and Preferred Protein lipids, that makeup the Meyelin Sheath, .... and I do believe, the new response; ordinary Clemestine, will now begin, - * to slowly begin 1.) rebuilding and 2.) regrowing the damage done previously to the obviously and rather delicate Meyelin Sheath. The goal: To Reverse neurological damage done by microscopic Parasitic Infection, and restore the subject person back to normal. ..*.. I think I will be adding the Clemestine, Antivert, and Neuriva soon, to the evolving Tincture for a [ Comprehensive Therapy Treatment ] . 👍❤❤❤❤ Note: on Nov 12, 2024, I found my Rx Antivert, took it, and it actually worked, for as the hours passed, I strangely began walking around as if I did during Year 3 of my MS diagnosis. Yes, very slight balance problem, but improvement enough to feel normal once again. Tomorrow, as planned, because the Antivert does cause a sense of fatigue and some drowsiness, I will purchase the Neuriva I mentioned, which should work to equalize the feelings of drowsiness, with a product which does Increase Alertness, thus the effect of Fatigue will likely cancel itself out. Wish me luck, for I don't have years to wait on studies, trials, and findings. My approach works because I am feeling like I am almost back to normal. Fact..Hope this helps. MDM, JD CANDIDATE ✌️❤❤❤