Multiple Sclerosis Misconceptions Explained by Neurologist [Filmed from Oahu Hawaii!]
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- Опубліковано 10 вер 2024
- A video about common misconceptions in MS filmed from my hotel room balcony when I was on vacation in Oahu.
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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.
I told my partner I was scared of ending up in a wheelchair when I first got diagnosed, he told me he could end up in one tomorrow - so we were just going to take it day by day. That was honestly the best thing I heard during those first few weeks. Now I realize it’s so different for everybody.
I think that is everyone's fear. The media only reports worst case scenarios of every illness. Everyone is different. Stay positive.
Thanks Dr. Beaber, when I had my first relapse I thought of Annette Funicello and her experience. I was terrified. It was the only reference to MS that I knew. I am now 15+ years into my MS journey and am doing well! I have learned so much along the way and am no longer fearful of the future with MS.
Your experience is common. I think a few decades ago, MS was more stigmatized, so people with MS who had less disability were more likely to keep it a secret.
Me too
Yes, the media are good at scaring us. They only report the worst case scenarios. No doctor ever told me only a small percentage of people with MS become severely disabled.
@@hcm444 you are so right! I am doing my best to share information on living well with MS!
@@EvenSoItIsWell I try only to read positive stuff now. You are probably aware of George Jelinek and his overcomingmultiplesclerosis website and book. Also Trevor Wicken and the MS gym is good for exercise.
Thank you for all you do to educate people w MS. You are a special human. Enjoy Hawaii!
Thanks. This video was filmed some time ago, but I did enjoy the vacation.
I’ve been following you since ages doctor, I’m feeling so confident in my neuro visits thanks to you! I’m starting MS medication next week for the 1st time since my diagnosis, feeling so excited and also nervous. Thanks for your all videoes and efforts, you taught a lot❤
I'm glad you like them. I hope the medication works out for you.
How long after you were diagnosed did you begin taking medications?
How fun! Enjoy your vacation! Thank you for taking the time to continue to educate while away with the family☺
Have a beautiful holiday Dr. B. and thank you!!
Wow, I have learned more about ms in half of this video then I have in the entirety of last year. My neurologist doesn't communicate very well...
Thanks Christopher.
Thank you so much for your video! I am newly diagnosed this year at 34 but I have had terrible symptoms since middle school and optic neuritis at 14. I live in a rural area where doctors didn’t take my symptoms seriously and really suffered through medical and psychological trauma as a result of this. It is hard finding data on people who have/had multiple sclerosis as children so this video is really helpful and hopeful for those of us who’ve had symptoms and progression that long.
Aloha!
Enjoy the weather- thank you for thinking of your MS family while exhausted . Excellent education and clarification on PRogression.
Rock on Beabs.
#SharingIsCaring
Dx- at 18
Now 45
Rrms. 🙏🏻
Enjoy your vacation! Thx for all the education and reassurance you provide ❤️
I certainly enjoyed it.
Enjoy your vacation! I’m going to have my family watch this video. It’s filled with great information.
I really appreciate that you're ongoing mentioning HSCT since it is usually neglected. There are high risks for sure. Anyway some patients want to take these - like me, because I don't really think the medications can reach the effect I'm seeking for, also from experience. I'm grateful for a couple of doctors in Germany who are trying to get the health insurances to cover this treatment through scientific studies. I want it so badly but can not effort 50.000 euros...
See "India hsct"
Cost is $30,000
I won a trip to Hawaii around the time I was dx w/MS and the second I left the airplane I was hit with a WALL OF HUMIDITY so thick that I was pretty much useless for the entire trip. If I didn't have a Vicodin prescription I wouldn't even have left the room. Outwardly the only way you could tell I was sick was my hair became limp and stuck to my head... It looked like I had lost a bunch of it too. Which I hadn't. That was the end of my relationship and the beginning of my disability.
Though I had a very bad flare in 2000, this HI relapse was 3 years later and ushered in a very busy MS experience for me.
Thank you so much for sharing this information with us during your vacation! You have a really generous spirit. As someone newly diagnosed, I learn a lot from watching your video and reading your book.
If you ever need a subject for future videos, I would be interested in hearing more about possible symptom reduction from DMTs outside of the MRIs etc. All I knew of the meds was a possible year before we would know if a med was working based on MRIs and the warnings of the drugs. So I was super hesitant of taking anything. I started a med and have only been on it a few weeks and some of my symptoms are dissipating, which surprised me greatly. Now I'm glad I started on a DMT. So it would be interesting to learn more about if some DMTs seem to improve the daily felt experience of the patient.
What DMT did you take?
Vumerity
Great video. Talking about progression, for me ten years ago I was full power.. now I struggle to the bottom of the garden and back, having difficulty accepting what seems to be continuous progression. I’m diagnosed with NMO and not MS though. Have a great rest of your holiday, all the best - Neil.
Thanks for the comment Neil. I like your video. I obviously don't know about your specific situation, but insidious progression is extremely rare in NMO. I would be curious to know if you have the anti-AQP4 or anti-MOG antibody or if you have MRI lesions typical of NMO (such as longitudinally extensive transverse myelitis).
@@DrBrandonBeaber Hello Dr Beaber, I do hope you're having a nice holiday and also I admire your dedication in doing these videos whilst away!
In answer to your question (thank you for asking by the way):
1. My current Diagnosis is Seronegative NMOSD (Neuromyelitis Optica Spectrum Disorder), diagnosed in 2019 after previously having an MS diagnosis in 2013. Also Previous to that around 2008 a Transverse Myelitis diagnosis, this is when my first symptoms began.
2. Quoting from my hospital letter "Blood tests on Mr Bradley from the 1st November 2019 show negative aquaporin-4 and MOG antibodies".
3. Also quoting from a letter "Neuro imaging at the time showed a mid-thoracic cord hyper intensity in keeping with demyelination but the brain imaging was normal."
I've never had brain lesions, only spinal cord (thoracic).
I've never felt confident with the MS diagnosis (2013 - 2019), and to be honest even though I feel more confident with it being NMOSD I have to say I'm still not 100% it's correct.
Best to you - Neil.
@@DrBrandonBeaber Do the symptoms of NMO mimic MS over the years? In other words, can do the symptoms appear years before actual diagnosis, and disappear like MS?
"Insidious" - Perfect way of describing progression 😂
Insidious= hidden evil
Wondered about the age thing with relations to progression. The 2 people with MS that I know personally seemed to be diagnosed in their 30's and in their 60's things worsened, now both disabled. I've noticed my symptoms gradually worsening over the years as I get older. Early on I felt like I didn't even have MS.
It is spms...only 20% avoid it.
Very good. Definitions made in the past always have to be evaluated (spss, ppss, rrms), nowadays they are not valuable anymore, they only blurr the vision and lead to useless debates and create fear with patients. Thank you.
Thanks for taking the time to post a video from your family vacation! Your dedication to the MS community is very admirable and we certainly appreciate all the info. I was diagnosed with RRMS over a year ago now, but have had significant visual symptoms for at least 8 years. Uhtoff brings out blurred/cloudy vision during any exercise in both eyes, yet I have optic nerve atrophy in only one eye with significant vision loss. My neuro-ophthalmologist said it appears I had neuritis in both eyes at some point, even though I never had classic symptoms of it except for mild eye pain during my last relapse.
I'm curious about the percentage of people reaching secondary progressive that begin treatment early with high efficacy DMTs like b-cell depleaters or tysabri. Has the percentage of patients reaching SPMS decreased and/or has the overall level of disability decreased for those in SPMS since their introduction?
Great video! I needed a video like this when I was newly diagnosed. I’d love to see a more in-depth video on the rare instances when MS is rapidly progressive 2:33. Thanks, I hope you had a fantastic holiday!
My progression creeps along slowly, but daily. Yet many of my physicians (unfortunately I have lots of them) have all asked me in past month or so if I was having a relapse 🤷♀️. I just respond with my typical answer that I always feel like I'm in a relapse that never goes away. Yet I see my disability progression easily & it seems it's at an unprecedented rate. I know your response is...see your MS specialist. Yet I am a type 1 diabetic 42yrs... we never use steroids for my MS so why bother? And I have pretty much run the gammet of MS DMTs due to either risk and/or too potent for myself. I am still looking forward to learning more about the BTks and hoping that the trials prove to have great results with little to no side effects AND little to no (ms brain cannot think of word but I'm trying to remember it ... When someone has say a disease or health issue that disqualifies them from taking a med). I also feel that the more progression I face, the less I am able to get out and even get fresh air! So... I am going to give you some advice... Next time you are on vacation with your family, be with your family. Nevermind the videos. You need to unplug and enjoy it. Take some time for coffee and just sit out and enjoy the air with peace and quiet or enjoy time with those kids! Mine went from 0 to nursing school in a blink of an eye! You cannot get that time back. And after I woke 5yrs ago without use of legs (not MS) and lost both my parents within a couple yrs & the love of my life, I tell everyone to make sure you spend time with your family and self more often. Time is the one thing you can never get back.
Great topics - thank you Dr. Beaber for the clarifications. You always make the info easy to understand. On another note, try to have dinner at Michel's at the Colony Surf, catch the sunset. Michel's is our favorite restaurant when in Honolulu. Also, since you're not headed to the office anytime soon, indulge in a Lava Flow - at least once. Enjoy your well deserved vacation.
Thank you for this video, Dr. Beaber!
As someone who got diagnosed last year at age 18 it’s good knowing that it isn’t very likely I’ll have progressive MS when I’m 30, especially considering I’m on a modern dmt.
Glad you enjoyed it. There is a ton of variability, but the majority of young people on highly-effective DMTs are relatively stable.
One question!
After I became disabled I moved in with my grandad. He's 98 in Virginia. He liked the house to be warm and the humidity in VA is often like 99%.
I'm humidity sensitive... Not so much heat alone.
Well. For 3 years I was bed ridden and when I finally moved out I was almost immediately better.
That's a long time for a pseudo but in hindsight I'm positive that's what it was. I was just wondering if that length of time spent in a pseudo relapse could cause damage even though pseudo's don't normally do that.
It's hard to tell with MS if anything is viable because there is no definite disease course.
Thank you!
Mahalo!
Newly diagnosed with a totally of 3 lesions. Fingers cross I get to start the UT southwestern Dallas research for kesimpta.
Honestly, if I “relapse “ I want to just do HSCT or something similar. I am so healthy right now. I am nervous to wait until it is “too late”. 😅
Relapses are not the disease...even with no relapses Ms progresses
You just can:t feel it.
Get hsct asap.
Thank you for another 👍 vid. Question: agree with the continuum RR to PMS. If a continuum, would any effective DMT work anywhere along that continuum? Thank you and enjoy Hawaii
Generally speaking, evidence suggests DMTs are more effective in younger people earlier in the disease. This doesn't necessarily mean they cannot be effective later on, but there is quite consistent data showing best results in younger people.
I'm 58, with diagnosed PPMS, and been offered Ocrevus. I'm fit readyfor a fight, and wondering why I have not been offered Hematopoietic Stem Cell Transplantation. What might influence a doctor's advice towards Ocrevus as the only choice which has been mentioned.
Enjoy your holiday!! I've been to Maui 2016- just me and the hubby
Are you going to check out pearl harbor since you're in Oahu?
Future video suggestions:
Another video with you and Dr Boster? Share your opinions. Concerns excitement over all the new research and advances in treatments for us MSers
- how about interview with selma Blair?
Please- NO MORE WORKING! Enjoy your family and Hawaii!!!
I am long back in Los Angeles. We did see Pearl Harbor. I will definitely do more collaborations with Dr. Boster in the future. I would love to interview Selma Blair, but I don't have that kind of clout :)
Living the dream!
I believed that the number of lesions correlates with the level of disability in the future. But this is not necessarily true? Could you give some insight on this?
Have a great vacation in Hawaii, Doctor! 😊
The brain can work around lesions..this is why people recover from relapses...brain
atrophy is what really leads to disability.
Problem is dmt only stop relapses and do not result in normal brain atrophy of .2
search "brain atrophy in ms" it varies from
.5-1.3% a year and dmt does not reduce it.
only hsct can...see "normal brain atrophy after hsct for ms"
There is a correlation between MRI findings and disability levels, but it as not as strong as people presume. For instance, this study found a weak association (r = 0.344) between composite MRI findings and the expanded disability status scale (EDSS): www.ncbi.nlm.nih.gov/pmc/articles/PMC2935291/ There are probably various reasons for this. One is that location matters. A single lesion with significant damage in a critical area can cause major disability. Other regions are more forgiving. Also, tissue that is T2-Bright on MRI may function well due to remyelination and preservation of the underlying axons.
@@DrBrandonBeaber "not as strong as people presume" Because rr people are terrified of lesions resulting in relapse..so as ageing and dmt reduce relapses...people think they are cured cause they have gone
ten years w/o relapse...but no that is right
when spms kicks off and now nothing can stop progression. People can not feel "pira brain atrophy" they only feel relapse...it is horribly ironic.
@@DrBrandonBeaber a
Damn, and I just flew into LAX... and so jetlagged too
The transition to the "progressive" stage characterized by age makes quite a bit of sense - I thought brain atrophy from 50-60+ years of age speeds up. Considering the functional reserve swimming pool model all of the historical lesions / damage becomes apparent as the functional reserve (water) more rapidly drains away / depletes. Frequent lesion development is replaced by higher brain atrophy.
Furthermore when considering the "area under the bell curve" for MS age diagnosis I imagine a peak around 30, as you stated, this splits the group in those under 30 and those above. Given 200 under 30 and 200 above there may also be a tendency of the older age group to drag down the "time to PPMS". Perhaps avg. time for those under 30 may be 30 years for instance but those above 30 on average 15 years. This would give an "average" of about 22 years till onset of PPMS. This because the older group includes those over 60 who may also have gone long periods without diagnosis / DMT and thus also a higher tendency for worse outcomes potentially (I would assume). In this way the data is a bit misleading as you suggest. Discretization of outcome by age group may be more appropriate instead of lumping everybody together imo (as I said in a prior comment I believe) :) . Thank you for your insightful and interesting video even on your holiday! Have a great time Dr. Brandon :)
I agree with everything you wrote. Looking at averages gives a false sense of homogeneity.
Mechanisms of disease initiation may be an interesting one, although you have likely already made a video on this. I believe it is likely a cluster of epigenetic factors that led to my MS being triggered/ caused. I lived in Norway when i was younger (age 10-18), so low vit D and no light for 7 months of the year - when there was enough light you had to be lucky enough for it not to be raining outside. I also came from a household with quite a lot of stress + I used NSAIDS for quite some time as I hoped it would help with my acne at the time. I believe this combination may have led to some gut dysbiosis / leaky gut. Since I also drank quite a bit of milk / ate cheese at the time I wonder if there was some cross-reactivity / molecular mimicry that triggered the beginning of my autoimmune reaction. Although there are likely 100s of factors like the EBV that create a perfect storm I suppose. Currently on Vumerity (as I am in NL it is the highest they will allow for now) I am wondering if Mavenclad may also provide some long term immune benefits similar to HSCT. ( I am unsure as to whether to select mavenclad early on in diagnosis rather than ocrevus) My thoughts being Mavenclad may offer some retraining potentially while Ocrevus seems to slam the breaks on B cells.
I do have some videos on the risk factors you mention. What do you mean when you say that Vumerity is "the highest they will allow"? I definitely think mavenclad is more effective than vumerity but obviously with more risk. I think ocrevus likely has a better risk/benefit profile compared to mavenclad but they have never been compared head-to-head.
@@DrBrandonBeaber In the Netherlands when you are first diagnosed officially you only are allowed "tier 2" drugs - you have to have another attack / significant activity before you're allowed something more effective. It's archaic. I have quite a few lesions in my head / 5 in my spine yet I have to wait for another significant relapse to get something better. It scares me to be fair as I don't feel like waiting around for increased disability :/ Will check out those videos! :) thanks for replying Dr. Brandon, hope you have a fantastic holiday :)
Thank you for sharing this information. It is so interesting how MS treatment is different in every country. USA is so big and even with that there are different approaches.
Can you please do a video on the different theories regarding WHY the white blood cells are eating away at the myelin in the first place? Is there some kind of pathogen there, either a virus or parasite etc... that the white blood cells are dutifully trying to destroy and that the myelin is collateral damage? If that theory isn't plausible, I have yet to hear explained why it isn't. Thanks Dr. Beaber, I trust your opinion over others'. Have a wonderful vacation!
The strongest evidence for a virus causing MS would be EBV. I have two videos on this topic. Epstein-Barr Virus Causes Multiple Sclerosis! [US Military Longitudinal Study]: ua-cam.com/video/3bkEXWg3kTw/v-deo.html EBV Causes MS? ua-cam.com/video/nycIHwdWv-w/v-deo.html
Brandon...enjoy Oahu...make sure to hit Hanauma Bay and the Poke truck on the North Shore!
How about a video on how various efficacy DMTs affect progression? Is there enough info you can pull together to get any meaningful percentages etc?
Enjoy the island!
Mahalo for this video! Enjoy Hawaian paradise!
Interesting video! Thanks for the information Doctor!🙂
You're very welcome Yaniss
@@DrBrandonBeaber :))
Hi Dr Beaber, hope you are having a fantastic holidays. Can I ask you which DMT do you think would be best for RRMS patient NEDA for the last 2 years? I am on tisabry atm. Thank you Dr. 😊 Mónica
I had a complete hysterectomy in 2020. Since then i have issues with pain. Is this related to my abdominal pain.? I went to ER but they cant find the cause.. Now im taking pregabalin, baclofen but i dont like the side effects.
So if I experience muscle weakness when I weight train, and can’t lift as much, it’s probably progression?
@@chris1960 my neuro hasnt commented on it yet. My edss is the same, but i notice a change
@@OddinaryOne Don't stop working out and lifting weights. I made that mistake and I regret it.
@@ldjt6184 I will not. Every Scientific article says it’s good for ms. Why do you regret it?
@@OddinaryOne Because if you don't use it, you lose it, even more true if you have MS. I regret it because now I let muscle atrophy in my left leg develop at a fast rate and it has affected my mobility and now my walking is so much worse. I feel it could have been prevented if I had maintained my muscle mass.
@@ldjt6184 yes that’s why I use it by lifting?
Hello.
I was recently diagnosed at mayo clinic with ppms, notes say ppms without disease progression
What does that mean. Kind of contradictory.
Lesions are in cerebellum, stem and cord. My local neurologist disagrees with mayo. Says I'm unusualy old for ppms, 57 years
I can't comment on your personal situation but I do have patients with primary progressive multiple scleorsis who later "plateaued" and were stable.
So, in other words….we’re all FUCKED (unless we are “lucky”, as DR B likes to say.
Heat sensitivity or cold sensitivity is likely linked to damage done to the area of the brain responsible for regulating body temperature or something of the nature.
I actually don't think so. The hypothalamus is a grey matter structure generally unaffected by multiple sclerosis. I give an explanation in this video: ua-cam.com/video/YrH4SVY8HWk/v-deo.html
@@DrBrandonBeaber then in that case, it could be an indivialistic phenomenon that heat just causes inflammation which negatively impacts the individual.
Jay ! that was good info 2 know 👨🔧Dr. Brandon Beaber
Dr pl help me I sent detail twice on twitter
I was diagnosed with it when I was when I was 25 I believe. I’m 28 now and I must say this isn’t fun, don’t recommend lol.
The older u get progression worsens,anyway enjoy hols.
Dropped your hang up about masks, Dr. Beaber???? Tut, tut. You can never be too careful....