10 Hot Takes About Multiple Sclerosis From a Neurologist
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- čas přidán 31. 05. 2024
- 10 Hot Takes about MS with evidence/arguments to back them up.
a) Vitamin D does nothing
b) The drugs aren’t that effective
c) The outcomes of clinical trials are dumb. Disability progression (why not EDSS at the end of a trial vs. the beginning).
d) Blinded trials are not truly blind-unblinding side effects
e) No data in older people or people with advanced disability
f) Me too drugs are pointless
g) Screening MRI scans are overrated.
h) No one can predict the long-term prognosis of multiple sclerosis
i) Part of the improvement in prognosis is due to better, earlier diagnosis
j) It’s better to be lucky and have mild multiple sclerosis (“It’s better to be lucky thank good”)
Do you agree?
Selected Sources:
1)Ocrelizumab versus Placebo in Primary Progressive Multiple Sclerosis: www.nejm.org/doi/full/10.1056...
1) Siponimod versus placebo in secondary progressive multiple sclerosis (EXPAND): a double-blind, randomised, phase 3 study: www.thelancet.com/article/s01...
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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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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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I've had MS for nearly 30 years and this is the most honest assessment I've seen.
Thanks. Hopefully it does not come off as too pessimistic.
@@DrBrandonBeabernope-just straight shooting!
it would make so much sense to just buy a medication form the drug store lol @@DrBrandonBeaber
@@DrBrandonBeaber
i need ur help pls can i ???
Here I am almost 3 years out from my diagnosis, 61 years old, having spent so much time trying to learn what is the best approach to managing my MS, and now you tell me all these truths. THANK YOU. I'm just so tired of worrying if I'm doing it wrong and going to end up like my mother who died of PPMS at exactly my age. My MS is so much milder yet it continues to progress no matter what I do.
I'm taking Vitamin D every day. My immune system is wiped from Mavenclad and I'm currently being tested for lymphoma worried this drug has caused it. I'm tired. I just want to live my best life everyday as it comes, and stop worrying. THANK YOU. Dr. Beaber, this is not coming off as too pessimistic or cynical. I value straight talk and wish could get more from my doctor.
Kudos for supreme honesty, Dr. Beaber. Luck (or lack thereof) is indeed the most significant component of every case of MS.
Thanks for this. I am sixty and I was diagnosed with MS five years ago. My symptoms were and are quite mild and the doctors probably wouldn't be looking for MS if my sister didn't have severe MS (she died of complications when she was quite young - technically pneumonia killed her.) I have intermittent numbness and tingling and my balance is not good, but my main symptom is overwhelming fatigue.
I have chosen not to use any of the therapies because it just doesn't make sense to me to feel worse so I can be "better." I also find that many doctors are not nearly as good at understanding data as they think they are - thanks for offering a sensible analysis.
The good news for you is that prognosis of MS does not seem to be strongly genetic, and it is very common for one family member to have mild symptoms while another has significant disability.
This highlights the need for finding out the UNDERLYING CAUSES of MS and then devising treatment, rather than treating on the basis of relieving symptoms or reducing immune cells that attack. Thanks, Dr Beaber.
We will see what happens with anti-EBV therapies such as ATA-188
My thoughts exactly! No cure will ever b found for MS if we don't have causative factors. MS is umbrella dx for many causes, such as bacterial or viral infections, toxicity, may b bad luck genetics for some.
@@DrBrandonBeaberWill not work. I don't have any science to explain why, exc. common sense.
Thanks for this very realistic appraisal of treatment options and efficacy. After 17 years on 3 different DMT's (Copaxone, Rebif and Ocrevus) I have accepted that NO current DMT will halt my slow progression. I am 74 and exercise quite a lot, use a cane, eat right and socialize as much as possible. I do HIIT on an elliptical, yoga and weights 3X/week. Hoping more Rx studies address the EBV cause of MS. It's a hot topic. I am EDSS of 6 but will 'graduate to a 6.5 soon. At least still walking and talking.
Thank you dr Beaber for pro bono work that you do for us with your videos, if there were no CZcams neurologists and reddit community I would have never got honest opinions or anything MS related especially form someone that works with patients or patients who have this disease for a long time. My neuro is so bad at providing information or talking with patients in general and were I live switching neurologists is not an option. So for people like me your YT work is very important. Thank you again.
I'm glad it's helpful. Hopefully people do not find this video to be too cynical.
@@DrBrandonBeaber not at all, is what I would always like to hear, the hard truth, the cold hard truth. I cannot stand when doctors or government health websites sugar coat a horible disease for the sake of you feeling better about it and not generate anxiety. Yet again some people can handle the reality and some need a smoke screen between it and them
Thanks for your continuing CZcams presence on MS. I was diagnosed 13 years ago at age 40. Copaxone for me but no new lesions for many years. I can walk ok no cane…for a few miles but I miss jogging and serious hiking terribly. Nonetheless a very slight degradation in movement over time. I remind myself every day it could be worse so that helps with the sour grapes when this happens occasionally. Better lucky than not I really do look forward to the day that it can be treated medically with high confidence.
Thank you for this!
I had my first clinical manifestation at 17 (2002) and started my first DMT (Ocrevus) this year, once i've got my diagnosis.
I have an EDSS of 2. I honestly can feel the disease every minute of my life. I'm tired all the time, feel like I have the flu and I'm also drunk. My muscles are sensitive and get spastic when I go up the stairs or try to hurry walking. I'm numb all the time, I feel pain, burning, vibration, electricity and itching. I had a 3 month relief from Ocrevus and felt amazing, but by the end of the fourth month all my symptoms came back. I't was nice to not have a body made of steel and wood after so many years. I didn't even believe it could be possible.
I have lesion up to C2-C3 and my body doesn't feel connected to my brain.
Have a great day!🙃
Wow Dr. Beaber! Thank you for your honest take on this disease. Most things you mentioned, I have thought about a lot. As a fifty year old MS patient, I worry about being dismissed as I age.
I'm 66 years old, was diagnosis with MS in 2020. I'm on Ocrevus, my biggest complaint is I always feel dizzy when walking and very ackey, and my feet burn continually. Seams like nothing works. I get fatigue all the time especially when working. Honestly I think nothing will work on the disease. I just live with it the best I can. Thanks, great advice.
Thanks for these videos. I've been devouring these since being diagnosed a few months ago. You and Dr. Boster probably account for 80% of what I know about MS at this point. Speaking of which, here's another hot take:
Most doctors seem to be pretty awful at informing MS patients and helping them get a handle on what is happening to them, especially at time of diagnosis. When I was diagnosed, I was given brochures for Tysabri and Briumvi - that was about it. When I asked for suggestions on books that I could read to start trying to understand MS, my doctor just told me to go to the MS Society web site. I get better information than that when the dermatologist gives me zit cream.
I think this is a pretty big problem, and I would like to try to do something about it, though at the moment I don't know what. I'm certainly open to suggestions.
That is the entire reason I make these videos.
I have MS for more than 30 years, my mobility has declined in the last 3, so I use a rollator when outside my home to allow me to walk safely and smoothly. I am 61, on a DMT and generally healthy so I appreciated your assessment that I should be included in trials. I also found your breakdown of using a DMT versus not somewhat as a relief because there weren’t DMT when I was diagnosed and when they came out it was very unsettling and scary because of side effects and the unknown impact both positive and negative. I also agree that the focus of research needs to shift…we need myelin repair and brain inflammation reduction research to be at the forefront. Thanks so much for your insight!
Another awesome video Dr Beaber! We are lucky to have you. Much respect from Colo
Thank you for keeping it 100! I appreciate hearing honest thoughts and opinions. I often hear well rehearsed conversations that leave me frustrated and discouraged. Thank you for being real!
Great video. Some cold, hard truths in there. Agree that the prevalence of "me too" drugs is distressing. My take is that it is just plain greed by the pharmaceutical companies. Change a molecule and make an extra billion for the same outcome.
To be fair, I could just as easily blame doctors for this phenomenon. If we weren't so easily enamored by new "shiny" products, pharmaceutical companies would divert their resources elsewhere.
All true. I appreciate your honesty Dr. Beaber.
Thanks.
Thanks for your measured, evidence -based analysis. It's refreshing.
Straight talk! We need more of this, thank you
This is really important. I relapsed several times on Copaxone back in the early 2000s and always felt partially to blame because I wasn't doing everything perfectly. I've been "lucky" in the sense you describe, though it's hard for me to say that myself. I've retained mobility and vision. My hot take (after 24 years living with MS) is this: trauma likely informs the development and/or prognosis of disease like MS. I've long thought of the three pillars of MS as genetic susceptibility, viral exposure, and toxic environmental exposure. The fourth pillar might be childhood trauma, which can activate damaging processes.
they have done studies looking at childhood trauma in ms...but problem is everyone has it so it is a dead end.
@@mary-vy3modepends on what the “trauma” is. No two people are alike, one may be able to handle the trauma better than another person.
Thanks for the insights Dr B. I’ve likely had MS for almost 20 years now but have only been diagnosed and treated for 2 years, yet my disability level
remains very low. I especially agree with #10, except for the fact that the chances of getting MS in the first place are generally below 1% (and even lower for men). I wish I had this kind of luck with the lottery.
This is great! 19+ years here, relevant takes I've thought about myself. Thanks.
Thanks for talking honestly and truthfully about this disease. Again, neither overrating or underrating matters.
Thank you for a great video and analysis.
Excellent content in this video. You touched on one of my concerns, clinical trials that do not reflect patients over 55 years of age. Even if pharmaceuticals aren’t involved, I would think that physicians and patients would like to know long term prognoses. Great job!
Thank Dr Beaber. I enjoy the straightforward answers. Recently diagnosed and I'm concerned about being on B-Cell depleting therapy. Good to know that this might not do much for me. I'm hoping I'm lucky.
Thanks for the video!!
Thank you Dr Brandon for an honest review of ms
It's been 25 yrs of me and rrms. I did the ABCs for yrs then couldn't stand any more home injecting. Now im over 51, minimal physical issues, still bad balance and have cog fog. Now im certified disabled from working and on SSI but im thankful i still walk my dog and appear mostly "normal". Guess its MS for life for me- its constant but manageable these days 🎉. Kudos to the brilliant research community i feel like I won a little bit Im ok wit rolling the dice and take no meds at all now.😊 So be it!
I was diagnosed in December 2022 and I find your videos so helpful. I’m on Kesimpta and taking things one day at a time
:)
Excellent overview, thank you.
Thanks
Thanks for being honest with us.
I was considering monoclonal antibody recently and after this video I'm in doubt
Thank you for sharing this with us!!
No problem.
I’d love to see a video on your insight around the UCSF study on Clemastine and it’s potential for remylination. Great videos -many thanks from this 62 year old diagnosed 5 years ago with no relapses since taking Mavenclad (which sounds like one of the “ houses” in the Harry Potter series)
it does not work...
@@mary-vy3mosorry? What does not work? Clemastine? Mavenclad? Harry Potter?
Clemastine has been talked about for many years but never a therapy comes out. Mavenclad often works for a few yesrs.
@@mary-vy3mo ah, got it. Mavenclad has worked for 5 years for me--I am hopeful it will work for much longer! As for Clemastine, there is new evidence that it can help remylination in some cases, so again I’m hopeful! Have a terrific weekend!
see "beaber mavenclad" for his video...
What a great video. I'm currently awaiting diagnosis, somewhat terrified as I already have ME/CFS and am hypersensitive to most medicine. Ironically this vid makes me feel less terrified somehow.
Thank you for sharing such helpful information
Hmmm, as always you are giving me food for thought. At age 56 and starting Kesimpta this week after 6 years on Tysabri, before that Tecfidera, before that Copaxone, I'm beginning to feel that the treatment and all the side effects are worse than the disease. Maybe it's time to ditch the DMT's and just roll the dice.
Thank you for this video.
You're welcome
Just, thank you. ❤
Thank you! I enjoy the academics of your channel so very much!
I’m also now on board with low Ig levels and low white cell counts being a harbinger to stop Ocrevus. I’m on Ocrevus, and got covid with classic covid ground-glass opacities pneumonia. It’s been three weeks and I have had a fever of 101 every day. I just read that a 53yo woman had a fever for seven weeks. Whew.
Sorry to hear you got bad covid. It's rarer and rarer but unfortunately still exists.
@@DrBrandonBeaber Thanks.
Interesting video. I think the 'milder MS' is just people getting diagnosed sooner. Think back decades ago and people would get diagnosed years into the disease and have much disability. Now people get MRIs after early attacks and noticeable symptoms. We've pushed back the timeline for many new people being diagnosed, but also increased the people getting diagnosed. More people diagnosed will mean more people seem to be doing better, but compared to the 'old days' those older people who experienced random symptoms but no real lasting debilitating MS symptoms would go through life without ever getting diagnosed. Today, that same person is diagnosed early and goes through life doing great with MS and another pat on the back to modern medicine...or so it seems. 🙃
exactly this - agree :)
I just tapped a long comment and lost it... Bottom line was THIS WAS THE BEST EVER!!!! I FEEL LIKE HUGGING YOU THANK YOU FOR BEING GENUINE, HONEST, AND HOPEFUL AND TRULY THE MOST FANTASTIC TALK I HAVE HEARD! YOU HAVE GIVEN ME A NEW SPRING IN MY STEP EVEN THOUGH MY MOBILITY HAS GONE DOWNHILL+++ AM 60 ON NO DMT AND AM SINGLE BUT THIS REALLY WAS REFRESHING TRUTH! WHAT A JOY!!!!! THANK YOU.
p.s. this Carnivore thing of late .... Hmmm Jordan Peterson is intelligent and his daughter on it.... Dramatically different than OMS which I have the books++ but curious and Neurologists having a voice... but assume a thumbs down!?!?
Thanks again for this fantastic talk!
Honest, informative, insightful. MS 25+ years.
Hello Dr. Beaber, you mentioned the ORATORIO trial in your video. Firstly, thank you very much for making such interesting content avaiable to us "folks out there". I really think that due to your content I am better informed than my neurologist. I'm 47 and have MS for a long time (I myself would say PPMS), lateley I can hardly hide my numerous symptoms; they are more and more obvious and grasp in my private and work life. So I have the opportunity to try out ocrevus and I'm concerning to do so. But your evaluation of the Oratorio trial is a bit discouraging. Still, when I searched for the trial and read it myself (as a layman), I got the impressiion that yes, it would be worth a try. Then I read more and to my displeasure I saw that the trial was sponsored by Roche. Now that taken into consideration might even diminish the effect of Ocrevus on PPMS (knowing that the objectivity could be weak in the trial). Do you think the findings of the trial are trustworthy beyond doubts? Greetings from Germany (and thus apologies for any arkward formulations). Thank you for your work and effort, Björn Stolz
Writing this as Im sunbathing because if one of your previous videos on vitamin D and UV exposure - thanks for making these!
Thank you. Am 48 year old female who got diagnosed with MS in 1998. Have only had “emergency steroids 3 times since then due to optic neuritis, complete loss of balance at one pint (2001 for almost 2 weeks) , partial blindness in one eye around year 2000- about 6 months after my second child’s birth. I have three children now, 27, 23 and 21 years of age. Haven’t been on disease modifying therapy because I was young in college perusing my BS In Rehabilitation Counselling( changed my pre-med after my diagnosis with MS. ) . Took zaposia for 10 days this spring but felt worse than I was before. Now they think of giving me injections once a month therapy. I am happy I declined using meds when first diagnosed. After all, being informed about the side effects of MS treatment at the time and knowing little of the benefits vs possible side effects. I am Thankful to You for your non biased scientific approach to this matter. Above all, I am thankful to my Creator for keeping somewhat functional(good luck) and so far only on depression, anxiety meds and
supplements you recommend. Thank you doctor😊 🙏
It is amazing to think how much things have changed between 1998 and now in the options for people with MS.
@@DrBrandonBeaberI was diagnosed in 1991! No treatment options back then.
Your opinions make a lot of sense to me, they are definitely pertinent interpretations of the current data.
I especially agree that the idea that plenty of DMTs are available is an illusion, since many of them are so similar to one another. For instance, developing a new anti-CD20 drug today would not be of any interest to the vast majority of us.
I also believe it to be highly misleading for any of the current DMTs to be labeled as "highly effective", since none of them have been proven to have a significant effect against PIRA, which has been shown to be responsible for most MS-related disability overall.
We have plenty of drugs to prevent relapses effectively, which is great. But there's more work ahead. Critically unmed needs are effective DMTs that target the underlying mechanisms of progressive MS, as well as drugs that stimulate remyelination and neuroaxonal regeneration.
Thank you for this very informative video! All your videos have excellent information. For a future video, muscle spasticity. Especially in the legs. i call it "cement legs"
Thanks a lot for your honest explanation, Dr. Beaber. I can only confirm each item you've mentioned. I've had MS since 2006 and I've tried everything possible therapies, diets, vitamin D high doses. I even had an HSCT which I barely survived. What I understood for sure - the development of the desease depends on how lucky you are...
But, I'd like to know your opinion. Is there any chance of getting effective treatment within our lifetime?
Many thanks again for your support!
I guess I’m just lucky. I was diagnosed in 2010 and only the first year I tried DMT, but I didn’t like the side effects so I stopped. I have mild symptoms, mostly fatigue, cramps in my legs and pain in my neck.
this video is a real gift. I've watched many of your videos and I've found your reviews of studies to be some of the best information I've found on this disease so far. I'm trained in the sciences (chemistry, software) yet this is not my area. so I think of you as a Sherpa through this difficult material. You've clearly done the work and I appreciate that you've formulated defensible opinions that are focused on the truths the patient lives and spent the time to share them. also glad that you have a position which is okay with you doing that.
I imagine you would get resistance to saying things like DMTs aren't as awesome as everyone says. I did 4 shots of Kesimpta and triggered the worst Crohns flare I've ever had and anr still dealing with it 8 weeks later. The risks are real with these things, maybe especially so with comorbidities.
I still would love to see a video about MS and common comorbidities. maybe even try to address autoimmune more generally?
appreciate the episode. really good work.
100% agree on the medication classes!! When first diagnosed last year I was blown away by the choices... pick your poison. Having to read through 15-20 options with side effects isn't great for a patient. Makes a depressing situation that much worse. What made it worse for me is that my neurologist and MS nurse provided zero insight into choices.
It would be impossible to consider 15-20 options. A more practical approach would be to consider just 2-3 options at a given time proposed by a trusted provider.
@@DrBrandonBeaber I fully agree! In the netherlands sadly this isn't the case (at least from my experience). They are also backwards with treatment, not allowing the most effective DMT at onset. I have to get clinicly worse before I am allowed better meds... how backwards is that. I have to get worse.... to get meds that could have prevented me from getting worse. If they had offered me choice of Ocrevus, Mavenclad, Tecfidera that would have been a great start. Seems to be Ocrevus is one of the most popular and effective treatments around - perhaps this should just be a standard first DMT. Also an infusion ever 6 months beats 2 pills twice a day hands down.
For point 2 on medication not being effective. The medication definitely has room for improvement however in SPMS & PPMS hasn't much of the damage already been done? I think/ hope that if one takes medication early enough some of that disability progression can be prevented at a later age. At the point of PPMS / SPMS it is likely 20 years too late when it comes to medication if you haven't been taking any. Decades of lesion build up and brain atrophy mean that at a later age this damage is compounded and there is less that can be done. Great and informative analysis! Agree with a lot of what you said :)
Yes you are right. Disease modifying therapies are much more effective in young people with relapsing MS.
@@DrBrandonBeaberso DMTs are probably not effective for people diagnosed over 50? If taking DMTs does not prevent progression of symptoms or disabilities then its a pharmaceutical money grab. Which also means the doctors are getting kickbacks. No wonder they don't provide clear expectations or prognosis to their patients.
Thank you so much for being so candid doctor Beaber, my wife was diagnosed with ms (the doctor said its aggressive RRMS) and she is on tysabri now(he said she can be on it for 2years only) the problem is cuz we live in Iraq not all the medications are available(the doctor encouraged us to buy lemtrada abroad but it cost like 50.000 dollar ) for this price i can do autologous hsct with similar price (my wife is 29 years old she had optic neuritis and spasticity in her right arm which was reduced alot after 3 days of iv steroids but not completely gone) doctor due encourage us to buy lemtrada or do hsct .thank you so much in advance ❤
Great video as always but maybe follow it up with 10 things we should look forward to with MS! Haha this was a truth take for sure 💪🏼
I guess I could do a video on various government benefits for people with disabilities, but I am no means an expert in this topic.
@@DrBrandonBeaber Not exactly sure I understand your response. This video was quite negative and basically said its up to luck if you get sick or not and didn't provide many positive takes. I was simply stating you could make a video a little more up beat and list some positive things in the pipeline or to consider if you have MS. This video certainly not one that I am use to seeing from you nor is a response "well let me help you be a better disabled person."
@Dr. Brandon Beaber, are derma aesthetics like botox and/or fillers, or injections for varicose veins contraindicated with MS?
I know that things could be case specific, but are there enough data or studies regarding this topic?
On the age component I would agree but they should be treated as a separate sub group. They are definitely not representative of someone age 30. If we consider damage accumulation through time similar to a law of diminishing returns - by the time someone is in their 70s there is little that medication will do... If a study analyses the impact on someone between 20-50 this could show how much the medication is slowing things down more easily so I understand why they do it in part.
Thank you for the video. I have suggestion for another topic: Are People with MS at a greater risk for other diseases - and how to look out for them. I picked up that Hank Green knew he was a risk candidate for Hodgin's Lymphoma because he was diagnosed with an auto-immune disease earlier in life.
MS is not clearly associated with other autoimmune diseases or any specific form of cancer based on cross-sectional studies.
I was diagnosed in 2015. First I was on Copaxone my friends and family all said I looked awful but I felt ok eventually I could stand the injections anymore and had a relapse again spring of 2020 optic neuritis. Since then I’ve been on Gilenya which has made me feel a lot better up till this summer where according to the latest mri I have 2 new lesions. Walking for more than 10-15 minutes has become harder. The neurologist has suggested changing to Kesimpta. I’m ready to change but can’t stop the feeling that it might not work out any better. Any suggestions? I’m 50 and would like to continue work for 10 more years !
If only your office was closer to me! I’m 45 , female, having a lot of the symptoms, to include Lhermitte’s sign , but keep being dismissed. A CT and PetCt (cancer survivor) of thorax showed nothing and Brain MRI was clear. I’m so lost.
Love your videos, very informative.
Thank you, Dr. Beaber! Now i feel a little bit less crazy not trusting DMT's pharma marketing. Btw, there r Ocrevus & Kesimpta commercials on TV now ☹️
Yup the commercials are lies. Before I was diagnosed Oct 2022
Saw those commercials and said what an improvement. Started on copaxone it made me worse now Kesimpta 4moz. Some improvement.
@@dianefresca6896 Copaxon made me worse as well! I thought I was the only one in the world. All doctors were telling me that worsening on Copaxon ( multiple brain & spine lesions) was a coincidence.
Finally: you SAY what I THINK: That the Ocravus stops the lesions all right, but not the insidious disease progession. I'd still take the Vitamin D supplements, though, cause no one is going to get that much sunshine, and it's supposed to assist in absorbing all the other stuff. Gives me a good idea for a New Years resolution, anyway - to go out in the sun each day! Regards from Jerusalem!
Hi from Israel thanks for the interesting information gives a lot thoughts about MS...
:)
Thank you for the video!
Any word on Tysabri going to monthly injections here in US? I was told Dec 2022. Do you know what the hold up is with the FDA?
I suspect this will be available at some point but could not tell you when.
@@DrBrandonBeaber ok thx. I'll keep telling my one good vein to hang in there 😜
By taking D3 I have upped my level in blood tests to over 50- isn't that a good thing? or does it only help you not develop MS? and now 18 yrs after Dx won't help slow progression? BTW I am SPMS, on Ocrevus and have an EDSS of 5. We do have our daughter (21) take D3 as she would have increased risk of MS due to being a 1st degree relative and not much sunlight exposure, being of northern European descent and living "up north" in Wisconsin
When you show the 2 medications vs placebo, and state they aren’t very effective, in both cases the study compares the drugs in question against PPMS and SPMS, not RRMS. Aren’t the B cell depleters and other newer DMTs quite effective for RRMS?
I agree with your point number 6 except for Kesimpta. As a mom of 3 small kids, i love only spending 30 seconds a month taking my DMT and not having to spend hours in an infusion center
This is a fair point.
dr please I have ms and my moral tooth it's hurting and I'm scared to go to the dentist what's your opinion about tooth removal for ms patient
👏👏👏👏 no advancement has been made, correct!!
But what could we do if we do have aggressive onset ms and want to get better? We are the unlucky ones and with all these sides there has to be something we could do 😢😢
So basically make peace that MS is a crapshoot and carry on. I can take that now….would have been hard the first years to think that way. Thanks for the stats.
Genius - everyone with MS and their family member should watch this.
Thanks
Re: Lemtrada infusion reactions. I have had two cycles of alemtuzumab and didn't have infusion reactions at all (although the infusions were delivered alongside steroids). A bit alarming if 100% of patients get these reactions. Should I worry I was infused with something else by accident?
Very interesting talk but a bit bothered about that trivial detail.
interesting takes.
Ty for your take on these. “Show us the metric” 💪🏻🤘🏻😂 less BS - cut to the chase .
#MavencladMilf
Research-active, senior doctor with MS here. Couldn't agree more with you, Dr. B.
Would also add:
1. Research agenda continues to be set by clinicians rather than patients
2. We're still fixated on disease treatment > further disease prevention
2. We're still fixated on comparing mean responses, but failing to glean valuable information on why some PwMS are non-responders, some 'super-' responders
3. We're still fixated on single-intervention RCTs, rather than more pragmatic, multi-intervention RCTs. Why not DMD+remyelinator+mitochondrial support+statin vs. placebo, or DMD only? The purists would grumble, but the patients wouldn't!
I like the idea of multi-intervention trials as in the HEALEY ALS Platform Trial. Imagine a randomized trial of simvastatin 80mg QHS vs. continuing standard disease modifying therapy in people with progressive MS > age 60?
Can you do a video on why the diagnosis protocol was changed to one episode in 2016? Who funded that study?
I explain MS diagnostic criteria in this video: czcams.com/video/Ixns85V95-Y/video.html Here is the original publication: www.thelancet.com/journals/laneur/article/PIIS1474-4422(17)30470-2/fulltext?elsca1=tlxpr It is from "The International Panel on Diagnosis of Multiple Sclerosis." I am not aware of any specific financial conflict of interest.
Video suggestion: MS mimics! Please!
I have many MS-type symptoms and would like to hear what else could be the options. Curious, as it is surely a broad subject! I would like to know first what can be effecting the nervous system similar way. Autoimmune diseases.
And then of course there is surely some viruses and etc. Lyme disease.
(Example: I have full left side weakness and tingle; face, arm, leg and torso. Like drawn with ruler from the middle. And I am extreme intolerant to heat. But luckily no lesions! 👏 Curious to just learn more!)
Here is a video on MS MRI mimics: czcams.com/video/sZVGs0dtL5I/video.html
I’m 20 years old an was diagnosed with Ms in high school is it possible to Gene transfer T cells to create more CD8+ T cells instead of lowering the immune system.
Covid made my MS flare so badly with constant dizziness/blurred vision/cog fog still almost a year later. Have you seen other patients where this has happened? Long Covid maybe? My MRIs have been stable. Overall health is good, so this is bizarre. Not on DMT and I know a DMT won’t help me return to baseline at this point. Thanks for feedback!
@@enajenaj6841thanks for your reply! I do worry about not being on a DMT, however, I tried Vumerity right before I contracted Covid last year and it made me feel awful. Reluctant to try another one right now.
@@enajenaj6841glad you are tolerating it. Good luck to you!
Would you please do a video on just Tumefactive MS with more than one of them, symptoms associated with them as well. But only with brain lesions. Outside of the video in your years of experience is it normal for your O bands in CSF go down in numbers say from 4 to two in a matter of 3 years from onset. Are Tumefactive like lesions the same thing as TMS? Finally, can these Tumefactive lesions cause visual tiny muscle twitches and whole body left sided numbness that seems to get worse as the day goes on? I apologize for the short book here in advance? Just asking your experience you have seen with this. ❤
Thanks for the suggestion.
So I got diagnosed with MS my second or third visit, and I only went in there for headaches nothing else never had any problems just headaches
so, this is where we are - very good video, Dr. Brandon. but, nothing about low-fat dairy-free paleo-friendly diet? haha. ps. "once you have clinically manifest progressive MS with disability the therapeutic window has probably shut" - still ring true today.
Where's that quote from please? It is quite an interesting thought.
@@mirandafolland3440 professor Alan Thompson (Charcot Lecture). I found it on Gavin Giovannoni's blog and I liked it.
Can the symptoms of long-term opiate use be confused to cause a diagnosis of MS?
I often think that the Cause and effect are mixed up (i.e. low vitamin D is a trigger or MS lowers vitamin D, inflammation promotes demyelination or demyelination process promotes inflammation)
Here is a counterpoint: low vitamin D does not cause multiple sclerosis AND MS does not cause low vitamin D! It is sunlight that matters! Some evidence in this video: czcams.com/video/f0DqKB_L6-o/video.html
How does earlier diagnosis help people do better if you say DMT use may not be that helpful? What about being diagnosed early improves outcomes? Or am I misunderstanding what you said about DMTs?
I am giving examples of studies on progressive MS where DMTs are less beneficial. They are more effective in early relapsing MS. Besides, a modest effect over a long period of time can be very significant.
finally some honesty
Have you ever come across a PPMS or SPMS patient whose symptoms have suddenly changed or subsided for any reason?
Yes I have had patients with progressive MS significantly improve. It is not common for someone with longstanding progressive disability to experience major improvement, but it can occur in rare cases.
What are the “lucky people” like, eg any patterns or themes in terms of behaviour, attitude, or personality?
On a different topic, I saw that Dr Boster & The MS Guide are preparing to do a Live Stream together: would you be interested in joining them, if they were happy with that idea?
Unfortunately, it's not about attitude. Probably you will have less disability if you are 20yo white woman with neuromyelitis optical as first attack and recover well. But, as was mentioned, it's not guaranteed.
@grinch4567 that would be soooo great. I know Dr Boster and Dr Beaber have done interviews with each other. I appreciate both so much.
@@donnabolt5847
Me too!! Me too!!
Hope it comes together 😊🙏
is incense working? Its a nature product for the biggest part, Vitamin B12
Ok , but if they say there is no disability progression edss doesnt change?
Is it common for a MS patient to have lesions on the spine and none on the brain ? Thank you so much for this informative video !
This is very uncommon but I have seen this in rare cases.
Can vasculitis cause optic neuritis
what about the prognose of people who have it 30 years already?
This video discusses the Average Prognosis from MS EPIC UCSF Study: czcams.com/video/DGAgCARu4fo/video.html This video discussed Progressive Multiple Sclerosis Prognosis [Data From MS Base]: czcams.com/video/znLKyCMtqsw/video.html
I would love to come to you and get diagnosed by you
In point 2 you refer to progressive forms only. In the case of RRMS difference is bigger.
Yes you are right.
Wow.
Hi Dr Beaber, do you think that HSCT might be an exception to the long-term drug effectiveness rule or not? Thank you so so much for all the content you create. If you're ever stuck for a topic, or you just fancy making it, perhaps you could make a video about MS and alcohol? I've given up alcohol completely because of its inflammatory properties but I'm still having relapses every other month regardless so I'm wondering if it's worth me giving up the pleasure of ever having wine with dinner
I am not sure about HSCT because a lot of the HSCT studies have poor retention. This video looks at an HSCT Italian multi-center cohort study discussing long-term follow up: czcams.com/video/mRW3QKuj9qk/video.html People receiving BEAM appear to have better outcomes.
Numerous epidemiologic studies show no specific association between alcohol and MS, though some people with MS report they aren't able to tolerate alcohol like they used to.
Ahh okay, you just encouraged me to revisit some alcohol-MS studies I read and I think I think I must've gotten scared by the one that showed more lesions associated with alcohol consumption (even though the same study also showed decreased progression in terms of disability associated with alcohol). A large proportion of my relapses happened after drinking, but of course this could be pure coincidence. All the same, I'll stick to drinking a responsible amount (because the times that I did relapse , it definitely wasn't after a reasonable amount) just to put my own mind at ease/to not destroy my body generally. Thanks so much for replying, I've missed wine.
Already watched 😊that's why I was interested to hear your take. Thanks so much!@@DrBrandonBeaber
I suppose another hypothesis about the drinking (of large quantities)/MS potential link for me could be the sugar potentially
I disagree with point 6. Having multiple drugs with the same action mechanism creates competition in the market. It makes treatments more affordable.
great point
Sometimes but not always. This certainly did not happen with beta-interferons. See this graph of the cost of MS drugs: www.google.com/search?sca_esv=563100770&sxsrf=AB5stBgYJ-XdwV50_Me0jHWdnvX2vI23eQ:1694015791854&q=cost+of+multiple+sclerosis+drugs&tbm=isch&source=lnms&sa=X&ved=2ahUKEwiJpZHMrJaBAxWyI0QIHUzyAusQ0pQJegQIDxAB&biw=1920&bih=931&dpr=1&safe=active&ssui=on#imgrc=8gHlzZjGelX0XM
@@DrBrandonBeaber also isn't tecfidera and vumerity just a psoriasis pill that has been around for decades? Pills worth several hundred now bumped up in price to 30k annually... seems messed up. I half believe big pharma doesn't want to cure or do anything to stop MS... Better to milk people for profit for a lifetime. I think it is one of the reasons HSCT is not widely implemented.
“The best thing to do is be lucky and have mild MS“. I wonder if this is what he tells his patients
I would prefer an honest answer than some made up bs.