If I Had Multiple Sclerosis, What Would I Do?
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- čas přidán 15. 12. 2020
- Taylor Henley recently made a comment on one of my videos asking what I would do if I were diagnosed with relapsing remitting multiple sclerosis. I talk about my thoughts and consider some different scenarios, considering both lifestyle and disease modifying therapy.
Comment or ask questions below! I would be happy to answer!
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My book "Resilience in the Face of Multiple Sclerosis" on Amazon: www.amazon.com/dp/B07WP7H5LK
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.
Follow me on twitter: / brandon_beaber
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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Great video with lots of information. Thank you for answering my question
It was a great question. Thanks for the idea.
What would I do if I had MS? I would go on a keto diet to deprive the parasites in my body of sugar and then I would pulse anti parasite drugs and use an oxidizing agent and a binder to help remove the parasite toxins and I would also use Nattokinase to break up the biofilms surrounding the parasites and bacteria that the parasites carry.
@@raymilland3413 "pulse anti parasite drugs and use an oxidizing agent and a binder to help remove the...". Would you please explain this is more detail as i want to try your recommendation.
I was diagnosed at 26, and now I'm 38. It was definitely a shocker for me and I went through a depressed phase, and still do from time to time. Luckily we live in a time that the battle for stopping or hindering MS to a snail's crawl has begun. I only hope that they find a way to treat us but in a way that doesn't nuke our immune system so much, but enough to leave space for our cells to fight infections. One thing I do recommend for everyone is to jump on medicine asap once you get diagnosed. It's better to do something rather than nothing. Try to live an active lifestyle and eat as healthy as you can.
So are you good in terms of mobility?
@@dragonfire3727 I am blessed to be, and live an active lifestyle so far.
Very interesting video. I appreciate you sharing this way! I love your treadmill desk!
Hi Dr B. Will you do your own 'what if?' video on your CZcams channel?
Hey Dr Boster! How are you
He made me wonder about optic neuronitis and my sensevity to light and how the 🌞 gives me more severe headaches! I love to fish and hunt and walk in our many great parks and places here in Columbus since my diagnosis and increase in headaches I cannot do what I once could!
Any suggestions?
@@lesliex7894 This would be great to see.
The treadmill desk is amazing. Join the revolution. :)
I was also wondering what you thought of LDN and older patients?
No one knows what it feels when you have MS . It is easy to talk and to suggest when you are healthy standing out there on your feet. No one imagines the feeling of loosing your life every day. No one knows how every single day is worse than the day before. You literally loose everything all thing . It is a horrible disease
Hi, Noor, it doesn't have to be this way. Look for Dr. Hannah Yoseph books and Dr. Terry Walls videos and book. God bless you.
Yes... I am a shell of the person I was... and I have 10 kids..
❤
Noor, I understand. It’s the same for me
Your words were literally explaining what I really live with MS… may god have mercy on us all
Post diagnosis: Vegetarian, cut sugar to a minimum, very low sodium, take supplements (3000IU D3, ALA, Omega3-flax, B complex, curcumin with pepper, probiotic), make an "anti-inflammation" smoothie as often as I can (a ton of blueberries, banana, peanut butter, cinnamon, ginger, almond milk, flaxseed oil), I fast occasionally 1-2 days water fast, try to get enough sleep, have tried to reduce my stress a bit, training for a half marathon in april and am on DMF (not what I hoped for but still - I wanted to knock it out cold with Ocrevus but here in the Netherlands they don't allow that as first treatment). Hoping to keep it calm for as long as possible.
There’s so much more to take into consideration! The MS diagnosis is a huge shock to say the least! I didn’t have any calmness about me nor a scientific thought process that I’m hearing from this Neurologist. My eyes and strength were affectedI was affected, and given some meds then some pamphlets. I think having compassion, going slowly would be better for any one in a CIS state. This is a huge shock then grief while being watched by friends and family, felt like I was under a microscope. So glad I was warned not to get on the internet immediately because of ‘snake oil’ salesmen. We ARE a target :(. Living with MS is a journey, a rollercoaster some may say.
Thanks for sharing Annette. I don't think being a neurologist would make me immune to the shock of diagnosis. It is much easier to talk about it in theory than to actually experience it.
Annette I totally hear you. It’s so hard to feel good about those early immediate critical decisions when ones brain has a great deal of difficulty computing what is happening when it is under attack.
I’m a nurse of many many years. I’m used to researching and analyzing my options.
We do need someone, anyone to be our advocate, to greatly greatly support us when the onslaught of MS happens. Even though I was encouraged to be the “captain of my ship” by my doctor, which I get in theory, but my brain was mush and hopped up on steroids, lol, I was nuts. Horribly frightening. I remember yelling and crying at my poor husband. “ I NEED AN ADVOCATE!” I couldn’t process.
Yes a rollercoaster for sure. I felt I was on the The Twilight Zone Tower of Terror Ride”.
I wish I could give my new MS self of 2 years ago a big big hug. She just needed to be told, “I’ll help you, this will be ok, you are strong and will get through this, I’ll see to it and here is how we are we are going to do it”.
@@DrBrandonBeaber So when it comes to MS is it safe to say that you aren't one of those "Nutrition over medicine" type doctors like Walhs, McDougal, Campbell...? You're not sold on the "Let food be thy medicine" approach?
@@TisEYEthe1 I think nutrition is a very important part of health, but your question poses a false dichotomy. If I had type 2 diabetes, I would focus on diet and exercise. If I had chronic myelogenous leukemia, I would be more interested in imatinib. For multiple sclerosis, I suspect nutrition plays a very important role, and I give people advice based on my interpretation of best available evidence, but I can't say there is a specific proven diet in MS. Regardless, it is a huge advantage to have good overall health whether or not it specifically changes the course of MS.
@@TisEYEthe1Changing my diet changed my life.
This was an excellent video. Thank you for your candid insight!
What a badass!! You tried the drugs out?!?! Thank you for your work. We need more people like you.
A very informative video! My 2 tips for everyone without SM would be: (1) don't eat junk food, don't smoke, stay physically fit, take Vit. D or spend reasonable time in the sun, substitute red meat and animal fats with fresh green vegetables, fish, poultry, etc.; (2) as a kid, as soon as you are able to read and write and watch YT videos, learn as much as possible about possible EARLY symptoms of MS. I didn't, so when I was 40, I ignored this temporary tingling and numbness in my hand, which occured a few times and lasted for an hour or so. A year later, my GP doctor didn't think that the strange problems with my balance could be a symptom of MS (the problems were over for no reason after 3 days). 3 years later, I finally got closer to the diagnosis when I got optic neuritis (which subsided, FOR A TIME), but a few more years passed till I was finally diagnosed with MS, after another attack that left me half-blind. Now I'm 58, I can see with one eye only, my EDSS score is 6.5 (I can walk, usually without a walker, but I have difficulties keeping the balance). After a few years of slow progression of the disease (SPMS), a new active lesion appeared recently, so I qualify for the Meyzent therapy. I hope I will die as an old man, but without reaching 8 or 9 on the EDSS scale. :) Maybe those clinical tests on remyelination (clemastinum, metformin etc.) will result in an effective therapy before I reach 10 on the scale. :D
What a great video! I'm bummed this information and these options weren't available when I was diagnosed 14 years ago. You have a great channel. Thank you!
I always enjoy your videos, they are so informative, and easy to comprehend! This is one of my favorites, love the breakdown of your decissions
Great video, would love to hear about your thoughts on PPMS
Once again a great video Dr ! Speeaking from my heart ,I wish they were much more doctors like you ! Thank you !
Thanks for this video! It is very nice to hear your personal perspective on MS and what you might do if you were a patient.
love this video! i have tumefactive MS. I was completely normal and woke up one day and gradually lost all control on the left side of my body within 48 hours. I honestly wasn’t bothered by diagnosis, never honestly been upset, the only thing i was focused on was getting the best medication available to me. I just felt that there was nothing i could do to change it, so i didn’t feel it was necessary to be upset lol I feel like my positive attitude is part of the reason why I feel so good, that and ocrevus of course.
Have you researched hsct..it does better brain atrophy than ocrevus..?
Same! Had a letter from neurologist to gp this month! Having a call with my MS nurse this Tuesday, and seeing the neurologist on 1st Sept... hopefully can look at all of my MRI's since 2014.
I find it weird at how rare this is, and my mum calls it M&S MS 😂 hope you do well 😁
This was very interesting and informative. Thank you! I was shocked when you said you've "tried" the dmt's!
Thank you , recently diagnosed and this really helps with picking my treatment (UK)
Great video...I think the initial reaction to my diagnosis followed the four stages a person goes through with any traumatic event. The unknown path I was on was most difficult to cope with and my career path and goals changed in a big way as I had chased my career around the country. After diagnosis stability and getting kids through college suddenly became my primary goal. I would think a persons age, financial situation and occupation would play a huge role in how a person reacts too. Still the thought process you used was very interesting and thanks for the video!
Very helpful! Thank you!☺️
Great question! Thank you for answering.
:)
Super-informative and straightforward discussion. Thank you for this video, Dr. Brandon!
glad you liked it.
Thank you for talking about the silent disabilities
Thank you for these
Thank you Doc for the video. You don't have to do these videos but you do and we thank you for doing it .
thank you for your knowledge and your insight on this horrible disease .
Thanks. It's a lot of fun making these videos.
I have secondary progression. Had MS since O4. Doing fantastic!! Been on rebif , octrevus , kimsinta. 👍👈in remission
Thank you Dr Beaber. I love the information you give. I have moderate symptoms and I am going to start Ocrevus. I have been on a ketogenic diet, but I’m considering going back to OMS in the future. Keto has involved a lot of dairy and sodium. Diet is complicated and involves so many differing opinions that are sometimes literally complete opposites. It is challenging navigating the waters.
I can't say that OMS is definitively better than the ketogenic diet. This is unproven, and most of OMS is based on epidemiologic evidence which can be confounded by other factors.
Really good working
DrBeaber thanka so much! What about if you were diagnosed with PPMS? Another video perhaps?
Man, i loved this vid. Thank you so much. I also love the walking treadmill. I'm working from home these days and have actually been considering that...
Join the revolution. You'll never look back. Just search "under desk treadmill" on amazon.
@@DrBrandonBeaber i just might have to do that. So then are you also using a standing desk? I've already got one of those.. with a motor to raise/lower it. I love it.
May the good Lord bless you for making the the time & putting in the energy into making these informative videos!
Thanks
Amazing video ! Just highlights the difference between the US (and more) and the UK . I have ppms (12 years) and the only meds (ocrevus) I've been refused . Only time will tell if that's good or bad? Oh , to have options !
Thank you this was very informative.
I'm glad you liked it.
You will never know whats its like to have MS and how it feels. I would not want anyone to walk in my shoes.
This is definitely true. I am just speculating in the video. I might feel very differently if I actually had MS.
Thanks Dr. Beaber. I am following OMS and on a low efficacy drug but I am always looking toward the future and options if my MS changes. I appreciate you diving into this hypothetical situation and what you might do.
you may think it! no matter how hard you try you can't understand how it really feels like and the decisions you have to make after being diagnosed and knowing that it will change your whole life. also choosing a treatment when it concerns your own body, and outweighing the side effects and all. Plus knowing that there is no cure and having to choose something you may have to be on for life, or whow knows it may not work and you need to switch to another therapy. I was diagnosed when i was 16 years old. and I've been through 4 different therapies and now i am finally on one that works for me. 8 years strong! and thank you for your theory and also your science and smartness. but it's a painful experience for those of us who carry this.. i have been blessed as well. great doctors and a treatment that was made for me. Thank you!
I understand that things would likely be different if I actually had MS. I am just speculating here.
Wow with all this medication to slow down the progression of MS but they can't have something to stop the attack at once. Regenerate nerve damage is another thing but just to stop the attack itself would be nice. Great video!
You're the best. Thanks so much for this video.
glad it was helpful.
@@DrBrandonBeaber , I have been reviewing some of your videos and I could swear that I saw you include some charts on sodium consumption and the correlation between the number of relapses in RRMS. Can you tell me where to find it? I thought it was fantastic and would like to share with someone. Thank you, Dr. Beaber, for these incredible videos. I appreciate them more than you will ever know.
@@debraindxb On 4/25/2013, three papers were published in nature with the following 3 findings
a) Sodium regulates, TH17 cells, a subset of t helper cells implicated in the pathogenesis of multiple sclerosis
b) Sodium upregulates serum glucocorticoid kinase 1 (SGK1) gene expression which enhances TH17 differentiation in vitro and in vivo
c) High sodium levels worsen experimental autoimmune encephalomyelitis, an animal model of multiple sclerosis.
In an Argentinian study, high sodium intake was correlated with higher relapse rate and higher MRI lesion accumulation in multiple sclerosis. In an observational study, higher sodium intake was linked to a higher relapse rated
A low sodium diet is generally achieved by minimizing processed foods and avoiding added salt. The general cutoff would be less than 2 grams of sodium daily (the cutoff for low sodium used in the Argentinian study.
Sources: Sodium intake is associated with increased disease activity in multiple sclerosis." J Neurol Neurosurg Psychiatry. 2015 Jan;86(1):26-31. doi: 10.1136/jnnp-2014-307928. Epub 2014 Aug 28. Farez MF1, Fiol MP1, Gaitán MI1, Quintana FJ2, Correale J1.
"High dietary salt might exacerbate MS"; Nature Reviews Neurology 10, 548 (2014)doi:10.1038/nrneurol.2014.176Published online 23 September 2014
@@DrBrandonBeaber Oh, thank you! Again, you are super fast and thorough. We appreciate you so much!!!
Just found your video, thank you for this informative video, because I was just diagnosed with Tumefactive MS, which started as Transverse Militias and all this has taken a toll on me because I’m an American living in Austria and l was left with many defects one being language my German speaking when out the door. Thank you one a gain for the videos.
I'm glad it was helpful, and best of luck in your recovery. I'm publishing a video on transverse myelitis relatively soon as well.
Excellent video thank you
Thanks Lori. I'm glad you enjoyed it.
You're smart to take D3. I do the same but 140,000 IU once a week. I really appreciate your perspective. I was verydissabled a few months into onset but I was 14 and recovered very rapidly after IVIG when high dose steroids 1g daily didn't work at all. It was scary the next step would be chemo to destroy my immunesystem but IVIG had dramatic effects and 4 days after treatment start from 8/10 on the EDSS scale after 2 months from initial slight symptoms. I was not very disabled after that and basically fine with mild symptoms and exacerbations over the last 16 years untreated by any drugs. I'm considering Ocrevus your video is very helpful for me. I have a lot of very subtle symptoms but even together without a diagnosis of like severe anxiety as well. I hope I'm like your older patient that did nothing for 30 years I've already made it 15 so it's hard. I have a lot of lesions but meh. I like your philosophy.
Very very very good video!
Thanks Rute!
Thanks Doc for an excellent overview of a what if scenario without any rigid either/or pat answers I've been on Tysabri for 14 years and the past six months have been incorporating some OMS dietary changes ( !ow saturated fat, plant based diet with supplemental omega 3s) . My MS is stable and I've lost over 30 pounds which is helping some osteoarthritis in my spine and hips. Thanks again for your videos.
Thanks for sharing Craig. I'm glad you are doing well. You must have started Tysabri soon after it came back onto the market after being pulled for the 2 cases of PML.
@@DrBrandonBeaber I have stable Ms. And I think my ms started 2 years after my hepatit B vaccine. So I am not getting my children vaccinated with it because they are at high risk. Thanks God, I am doing fine in my opinion for about 15 years. Although I try to eat "clean" food, sleep well, avoid stress and do daily exercises(for resistance and treamill). Holefully will stay the same for many many years)
I have so many symptoms of MS, but the doctors keep saying no because of lack of lesion or demyelination. My 31 year old daughter was diagnosed last September with MS.
Diagnosed at 51, just 2 mos ago. Started losing vision a year ago, lost color vision in one eye that came back. However I don't think optic neuritis lasts for over a year. More of a demylin damage? My Opthamologist Neurologist said typically there is a sudden drop in vision, but it comes back and mine didn't. I can't work,my main symptoms are vision loss and balance issues. The stress of trying to pay my rent with no income on top of a disease with no cure is horrible.
Do they have disability welfare in your country?
Really interesting video Doc. ! I have an agressive form of RRMS,but thankfully I was done with Lemtrada last year! Hopefully I will go on another B cell depleter therapy like ocrevus (after COVID ends obviously!)or re-myealating agent or ultimately stem cell therapy if nothing works
Also I’d love to hear your thoughts on experimental re-myelenating agents Doctor!
@@wellnesshearddifferently5920 I do have a video on clemastine: czcams.com/video/T6p5e2TcR9Q/video.html I have another video on opicinumab (anti-LINGO): czcams.com/video/-t5eX8P_JEw/video.html
Thanks Doctor Beaber! You’re awesome have a nice day🙂
Great video, can you address the scenario of CIS with normal MRIs but significant symptoms including ON and brainstem syndrome such as unrelenting vertigo affecting quality of life drastically?
A famous study called the optic neuritis treatment trial suggests that the risk of MS after optic neuritis is low if the MRI brain shows no demyelinating lesions. This would be different if there are brainstem lesions explaining symptoms of vertigo. Unfortunately, I cannot comment on your specific situation.
After starting Ocrevus Jan 12,th 2023 for PPMS I am now strongly considering to discontinue and not having the 6 month infusion. I'm tolerating it OK, but the problem is not getting sick, but rather balance, stiffness, gait and fatigue all have increased slightly - but noticeably more in the 3 months since starting Ocrevus than I've experienced in the few years since my very unerratic PPMS symptoms started. Hope I'm not making a mistake, but in any case, Ocrevus is as I understand it only helpful in 24% of PPMS patients anyway. Plus for HSCT abroad I'll need a washout beforehand anyway.
Thank you for this excellent video. Do you happen to have any separate videos on Mavenclad and side effects or comparison with other drugs? Thank you.
I don't, but I'm going to do a video on mavenclad soon.
For a trained medical doctor facing a diagnosis of MS, you’ll do what’s best for your lifestyle, decide if you’re willing to put forth hard work daily (exercise, diet, sleep etc), and recognize with no comorbidities why alter the chemistry within, just get “cleaner” At 50, my husband died on my kitchen floor, I couldn’t walk for 6 months, my brother had had MS for 30 yrs, and I was a trained athlete. Brain MRI 20 lesions mostly in the cerebellum 1 yr later “Xmas tree” spinal lesions. 2013 dx EDSS 6.5 No DMTs, yearly MRIs show many new brain and spinal lesions.Menopause and aging have their issues as well. Neuroplasticity, Brain Speedball, 24/7 mindfulness, FSS 0
What is brain speedball??
Your the best neurologist I have seen before . Most information I have seen in a video . I need to ask you a question . Have you had any patients with normal mri and had ms? If you had how did you diagnose someone with normal mri as it doesn’t fit McDonald criteria.
It is extremely rare for someone with MS to have a completely normal MRI. I have seen a few highly unusual cases though. I had one young male patient with primary progressive MS who had no clear MRI lesions, but his spinal tap and clinical course was consistent with MS, and he later had brain lesions consistent with MS on a subsequent MRI. I had another patient who had typical MRI demyelinating lesions in the midst of an attack, but on a subsequent MRI, these lesions and shrunken and appeared nonspecific (which could be highly misleading if they sought a second opinion with a physician who was unaware of their first MRI). I should once again emphasize that these situations are very unusual. A normal MRI of the brain weighs heavily against the possibility of a diagnosis of MS.
Thank you for this video.
I now have to decide whether or not to start the disease-modifying drug ocrevus and I am not certain that this is the right way for me. I am trying to figure out based upon what you said if I am a mild case or benign ase of MS, God only knows, maybe its something else all together...
My question to you is would you consider making a video on deciding to end your life because of this horrible disease and because the future for someone with MS is more uncertain than anyone else's and the disease-modifying drugs only modify and don't cure....
I'm asking this because I am sure I'm not the only MS warrior that has thought about this.
It was a very informative video and based on your experience as an MS specialist, you spoke your heart out. Hats off to your contribution to the MS community. I salute your spirit for making this video as very few doctors, if any, would want to or have enough courage to speak on what they would do if they had MS. I absolutely love watching your videos and I wish I had watched this one 5 years ago. I would appreciate if you could make a video on what an MSer who has already accrued a lot of disability should do. What should his treatment protocol look like? How hopeful he should be about the future of regenerative medicines for MS and when can he expect to actually see those in the market to be able to benefit from them?
There is a personal bias in me wanting you to do such a video as I myself (at the age of 26) have accrued a lot of disability due to secondary progressive MS.
Thanks for the suggestion Aditya. I do have a video on options for progressive MS: czcams.com/video/gY2uW3itjIs/video.html
1:54 Rituximab (rituxan/truxima)
3:16 Ocrevus
4:09 Siponimod (Mayzent)
5:41 Tysabri
7:10 IV Cladribine
8:15 Methotrexate
9:16 Novantrone (mitoxantrone)
11:09: Biotin
13:38 Ibudilast
14:55 simvastatin (zocor)
16:04 HSCT (hematopoietic stem cell transplant)
17:29: Wahls Protocol
18:30 Comparison of 3-month disability progression data
For lifestyle, I think my decisions would be very similar. In terms of medication, it would depend a lot on age, recent relapses/lesion accumulation, and other medical comorbidities.
@@DrBrandonBeaber yes, sir, I watched that video... It would be great if you could also make a video on the ongoing stem cell (not HSCT) clinical trials like the ones at Tisch, New York and Hadassah Medical Organization, Israel. I have high hopes for those trials.
@@aditya50499 I am going to do a video on the recent publication about intrathecal stem cells at Tisch, and I am trying to get an interview with Dr. Sadiq. I will look into Hadassah as well.
@@DrBrandonBeaber eagerly waiting for those, sir.
Thank you! 🧡🧡
Thanks for this video. I had optic neuritis 8 years ago, and mri show 2 lesion, this month i did Mri again, a now i have 5 lesion, some felling on left eye, like pain or fatigue, and now I need to make decision what to do next. This was very helpful, i didn't make decision, but i will hear second opinion. I from Croatia, EU. I allready changed my diet, and started OMS diet. Thanks again.
I'm glad it was helpful. Best of luck in your decision.
@@DrBrandonBeaber as you said, no one can predict how it will be, but thanks to you and many other doctors and scientists we have hope for better future. Because I'm dreamer, i would like to hear what do you think about future therapies, and future of drugs, can we expect cure, or more effective drugs. Sorry for bothering.
Thank you! Both Rebid & Copaxon are totally horrible in terms of side effects. It's hard to agree to life-long meds without guarantee of efficacy & side effects being worse than disease symptoms. Thank you for understanding!
Awesome thank u so much:)
Another great video thanks. If you have a patient & they smoke do you tell them how bad smoking is for MS & they should quit. When I was diagnosed I was smoking & I was examined by two neurologists & was never told how bad smoking is for MS
I do tell them that smoking has been associated with a worse prognosis in MS on average and that they should quit.
The Coimbra Protocal of North America FB group is a life changing for MS’rs!! Best to ALL!
I have a video on the coimbra protocol if you would like to take a look: czcams.com/video/XPWNc0f2iHE/video.html
Idea for a follow up video, or a comment. It may be even more personal, but it’s only a suggestion. There are a lot of young parents out there that struggle with sharing their diagnosis with their kids. Being a father, if you were diagnosed with MS how would you share your diagnosis with your kids.
I feel like one of the biggest invisibilities with this disease; is the struggle parents with this disease go through, trying to be the best parent to their kids while also caring for themselves. There are not many resources or advice out there of how to handle this subject; and I think it’s something parents with MS need.
This is a good idea. I could talk about the question of disclosing your diagnosis in general.
how about a combination of a B cell depleter with an IL-23 blocker? Mechanistically a combination like Ocrevus and Skyrizi seems like it would work very well. Of course the crux of this is that the B cell depleters target CD20, which is also present on the surface of some subsets of T cells. Obviously.
Thank you, Dr. Beaber! I am 21 years old and recently diagnosed with presumptive MS (still waiting to complete spinal tap). MRI scans revealed lesions on the brain and cervical spine. I will see an MS specialist at the end of Dec. My appointment is in Woodland Hills, CA with Dr. Julie Lynn Debacker. You might know her! Is there any advice you could give me on my first visit? Is there any type of questions I should ask her? Thanks again!
I think you avoided the elephant in the room.....Relapses and progression and increased disability even though you are on the highest level DMT possible. You approach this just as I would expect a doctor to: treatment options. You wouldn’t want to walk in my shoes. Or wheel around in my chair. I think that is probably the most difficult aspect of living with MS. I’m very resilient, and I’ve gone through many different stages of loss, and learning new ways to live. And for me, for 15 years, that’s what MS is. And yes, I take Gilenya, because my body can’t tolerate Rituxan. Plus I had two major relapses on it. Bummer. This was definitely an excellent video on the choices and the thinking through what kind of DMT a person with MS would want to be on. And people out there reading this, if you have a MS, get yourself on a DMT. Life is precious, don’t waste a minute of it!
You make a good point about situations where people experience progression despite high efficacy DMTs. There is not great evidence for what to do in this situation, and Prof Gavin Giovanni and others have made the point that "smouldering" MS may require new treatments targeting microglia within the central nervous system. It is frustrating to see the lack of progress in this area. I do have a video on progressive MS treatments showing some options: czcams.com/video/gY2uW3itjIs/video.html
1:54 Rituximab (rituxan/truxima)
3:16 Ocrevus
4:09 Siponimod (Mayzent)
5:41 Tysabri
7:10 IV Cladribine
8:15 Methotrexate
9:16 Novantrone (mitoxantrone)
11:09: Biotin
13:38 Ibudilast
14:55 simvastatin (zocor)
16:04 HSCT (hematopoietic stem cell transplant)
17:29: Wahls Protocol
18:30 Comparison of 3-month disability progression data
Hi Doc
37 yrs, RRMS, on Tecfidera, had the protein bands in my spine and a few lesions on diagnosis. Although without the bands they wouldn’t have diagnosed I dont think. I get semi regular, sometimes noticeable flushing and semi regular digestive impacts of taking Tec. Any ideas on treatment changes?
Been stable for a while .
Don’t think I’ve had a relapse for ages . Although I do get some tingling of feet and hands.
I am a Kaiser patient in SoCAl. Diag w/ PPMS in Jan (up from RRMS). I am intermittent fasting 18/6, drinking LOTS more water and also lost 20lbs in Jan 2024 alone.
I take lots of vitamins daily, I took 1000/500mg Rituximab in 2022 and also 1800 mg of Gabapentin daily for hand/feet/leg neuropathy pains.
MRI shows heavy burden of lesions in Brain and spine.
MS symptoms: Hand feet Pain, Cog-Fog, trbl walking, leg spasms, Numb Spots, A lot of Fatigue, and loosing strength (can't run), I don't like wearing shoes as it hurts my feet.
I am still working 40hrs a week at desk job. I have NOT told employer. Hopefully hiding it well?
Sometimes I use a cane later in the day (6pm) when I get home. Every day is a little different (Nap, no nap. work load etc)
I take my time and I am very purposeful on tasks I perform. (Esp walking)
and to wrap it up. After 2 hrs of physical work (think yard work) and I am done for the day as my energy is depleted.
Can you do an updated version of this video?
Thank you ! **Ever heard of bad skin rashes or bad eczema flair ups on B cell
Deleters ?
Very interesting. I'm on Copaxone and 90% OMS. MRI has been stable for 2 years, but I'm always wondering if I made the right choice being on Copaxone. My neurologist actually wanted me on Tysabri when discussing DMT's. Well only time will tell I guess.
Interesting, professor Jelinek himself took copaxone and has a very favorable opinion of it, and I have certainly had patients do well long-term on it, though tysabri is definitely more effective overall.
Thank you for this video! Amongst the patients with breakthrough infection in your hospital group, do you have any idea of the trends for these cases? For example, are they mostly older patients similar to the Israeli data, or perhaps patients with severe immunosuppression (such as those undergoing chemo or organ transplant as opposed to common autoimmune medications like for MS)?
They definitely tend to be older and sicker, but I don't know the specific details. I would imagine the demographics are similar to what was seen in this study in Israel: czcams.com/video/WIiRVAC7GnE/video.html
@@DrBrandonBeaber Thank you very much for the reply (and my apologies for any confusion, I had meant to post this comment on your recent video on booster shots!). All the best
@@ninacee9140 I figured. :)
Interested in hearing what your thoughts are for folks currently on Ocrevus however does not seem to be effective in that progression continues.
You may appreciate this video on so-called "smouldering" MS which could explain why DMTs do not work well for everyone: czcams.com/video/U46hyGkzgkM/video.html
Dr can you do a vid on tumefactive ms?
I know kesimpta and ocrevus is same as b cell depleter, but if you would select one, what would it be ?
I just had basal cell carcinoma removed from my nose. Your comment on getting more sun is the opposite of my plan now. But I do take vitamin D supplements. Does the good rays make it through SPF 50 sun block?
Hi Leslie. Im sorry to hear about your carcinoma. Hopefully that's the last of it. I thought your question about spf 50 was excellent & hopefully will get some traction here or in other forums.
Randy Newman sings, "You can leave your hat on", but Dr. B tells us to " take your shirt off", so topless sunbathing with a stylish hat maybe just the ticket. (😆 lol).
Be well.
This is a complicated question as UV exposure is definitely linked to skin cancer. Professor Jelinek shows some data in his book suggesting that brief but frequent sun exposure is not strongly associated with skin cancer. Sun burns are definitely bad.
@@kevineeverhart7869 :)
… This video was really helpful. I’m glad I saw it, I wish I would’ve seen it 10 years ago. Keep up the good work you’re a sharp guy.… Also I’d like to know where your clinic is and if currently you’re taking new patients?
I work at Southern California Kaiser in Downey.
Can I get in to see you with Blue Cross PPO?
HOLY SMOKE!! You tried the DMT’s??? Amazing!! You’re a hero!
:)
I was really impressed with this too! Talk about dedication to your career and your patients!
I would like to ask for an opinion if Tysabri or Ocrevus is the better medication for MS? Are there any researches comparing data for both drugs? And does one of them have fewer side effects than the other?
I have currently being treated with Betaseron and Tecfidera, and they have shown as ineffective for stopping my MS progression. So my physician is going to change my medication and is asking for my preferences.
I can't give you personal medical advice, but in my opinion, tysabri and Ocrevus are approximately equal in efficacy. There has been no head-to-head trial comparing these two drugs. Ocrevus has better data for primary progressive MS (The OROTORIO trial) but is not necessarily more effective. I wouldn't say one has a better side effect profile. They just have different side effects. I have separate videos explaining these to medications on my channel if you would like to take a look. I wish you the best of luck.
I just have to say that I absolutely *love* that you have actually taken some of the MS DMTs yourself. I really strongly believe that all neurologists who have MS patients should do this as well so they can actually experience what they are prescribing for their patients to experience. Same with anti-seizure meds. Try taking Keppra for a month and see how many people you would prescribe it to after that! 😁
I also appreciate that he tried some of these DMTs. I'm surprised they he tolerated interferons so well tho. I had horrible non stop flu like feeling from them...even worse than the constant flu like feeling that I already have from MS. Lol.
Also the Copaxone for me was easy but only in hindsight did I notice it's benefits.
After watching this I think I will try the Tsyabri.
Thank you so much.! Believer in induction therapy. Worked for me.
But if “I were your mom”. I’d be mad that you were trying out these drugs on yourself. 😬
Haha. I should send that video to my mother and see how she reacts.
Is it typical for MS to start as odd sensations in arms, and then spread to one leg, then another leg over a period of 1-2 weeks sensations of vibrating inside the body like walking on electrical wire but no weakness or numbness at all and then recover fully? Everything bilateral.
Would the additional info about b-cell depleters and Covid immunity that was just published change your mind about starting them prior to getting the vaccine if you had a low disease profile but had more symptoms than mri activity? Tecfidera and Aubagio are not an option due to side effects. Would you even consider Gilenya until after you get the vaccine?
It's difficult to say. I certainly would consider delaying treatment right in the midst of the COVID-19 surge if I had low disease activity...or until after vaccination. I'm not sure that gilenya is actually safer, and there is also evidence that gilenya impairs vaccine response. Take a look at the data from this study: " for influenza vaccine (fingolimod vs placebo) were 54% vs 85% (0.21; 0.08-0.54) at 3 weeks and 43% vs 75% (0.25; 0.11-0.57) at 6 weeks postvaccination.
For TT, responder rates were 40% vs 61% (0.43; 0.20-0.92) at 3 weeks and 38% vs 49% (0.62; 0.29-1.33) at 6 weeks postvaccination
"
Source: pubmed.ncbi.nlm.nih.gov/25636714/
@@DrBrandonBeaber 😯, I wasn’t told that. Another thing I was not told in office but remember is that Gilenya has a chance of major rebound disease activity when stopped. Seems like an unnecessary risk for someone like myself who has had ON and just two or three lesions with no extra o bands. I probably just need to watch more of your videos to find this out, but if getting on a b-cell depleting agent after getting the vaccine will a person retain the antibodies? Is there a good amount of time to wait to ensure that a patient keeps them? I would like to be on something because I have some memory issues as well as some bowel and bladder symptoms that can’t be ruled out as being part of my MS diagnosis and I want a little bit of an insurance policy for that reason although my doctor did say that watchful waiting is ok for me. I’ve tried two other orals that didn’t go well. I was told at my doc that the risk of PML from Gilenya is lower than the risk of Covid killing a person if taking B-cell Depleting agents. Given that now I know that Ocrevus doesn’t really increase mortality rates in spite of its higher hospitalization rate I see that this may not be true. She was also concerned that B-cell d’s shut down the immune system for too long so in the event a person is to get a major infection while on it you can’t just stop it, fight off the infection and move on like Gilenya. Do you have any information on debunking this or putting in perspective what the actual risk is for this scenario? I understand that b-cell d’s are more effective so perhaps worth a slight increase in risk for most MS patients. Thank you for your well informed videos and Q and A. I find this video on what you would do for yourself as extremely valuable. I hope Dr Boster does one too so we can see the similarities and differences as I’m sure even among the best MS doctors there would be some varied opinions.
Hi Doctor, did I understand correctly you personally feel high does high frequency
Betaseron shots are safer than low-efficacy Aubagio pills and have better long-term safety history? Thank you for your videos.
I would say Aubagio is relatively low risk, but betaseron has a very long safety history, and beta-interferons are naturally produced by the liver in response to viral infections anyway, so everyone has exposure to beta interferons. Betaseron was FDA approved in 1993, so there are people who have taken it for nearly 30 years.
I found that information very interesting! Thank you.
sunlight exposure and adjusting sleeping hours to be early on night (hard to do with the drug to control sleeping?
Thank you for the videos! What are your thoughts on the stem cell therapy that Dr Riordan performs at the Stem Cell Institute?
I would have to look into this. Is there a relevant citation that you can link? I am going to publish a study on the Hadassah trial in progressive MS tomorrow.
@@DrBrandonBeaber Here are some links -
A study - translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1433-7
His site - www.cellmedicine.com/stem-cell-therapy-for-multiple-sclerosis-3/
There is more information about the procedures they perform in Panama on his site. They are much less invasive than HSCT, but I think that is also reflected in the results, which aren't necessarily as dramatic.
His most famous patients are Sam Harrell (a Texas HS Football Coach) and Mel Gibson's dad. I only mention this because both were very public, Mel Gibson was on Joe Rogan's podcast in January 2018 with Dr Neil Riordan - open.spotify.com/episode/1MZEjzmQRpHYhExwzbVr11
Thanks dr Beaber,
What would you do if the B cell depleting therapy would fail?
I guess it would depend what constituted failing. If I had very aggressive relapsing MS despite being on a b-cell depleting agent, I might consider something like pulse cytoxan and long-term oral prednisone for a period as a I discuss in the video.
@@DrBrandonBeaber interesting! Thanks Doctor B!
When will the generics of these meds be available
Oh gosh I hope I made the right choice. I had one attack 1.5 yrs ago, 10 days after receiving a flu vaccine. I had positive O bands and high igg, but only 1 lesion in my cspine. I already had positive ANA because I was diagnosed with hashimotos 3 years prior. Healthy active 34 yr old with no other health issues. I recovered after 6 months of PT/OT and have no remaining symptoms. Dr diagnosed me with transverse myelitis due to the vaccine or possible ms. Now, 1.5 yr later after doing routine MRI’s they discovered one small ms looking spot in the brain. I have no symptoms and I was recommended Zeposia for it being highly effective with a decent safety profile. But now hearing you wouldn’t take it, makes me worried I should be taking tysabri. But also since my case is considered mild, maybe I should be just watching it instead of unnecessarily putting poison in my body. This is hard. Thank you for the information because now I have questions for my doctor. I’ve been on Zeposia for 2 weeks only. No side effects so far. Still nervous about it all though.
Thanks for sharing your story. I was not trying to stir up doubt as every situation is difficult, and it is really impossible for me to speculate about every possible situation. I would consider zeposia/gilenya/mayzent to be moderate in efficacy.
@@DrBrandonBeaber Oh I completely understand that. I wouldn’t say you stirred doubt. I appreciate the perspective, as it got my wheels turning and gave me some questions to ask at my next appointment. My bad, yes Dr told me to choose from tysabri/ocrevus/Zeposia. Zeposia not being as effective, but if I wanted a pill option, that would be his recommendation out of the choices for pills. With covid, the pill seemed a bit safer than going out to an infusion center right now. I’m thankful I am feeling good today and I would like to keep it that way. Your videos have been helping me through this process, so thank you!
@@heatherpeterson1473 hey what was your treatment for hashimotos if you don't mind me asking? Also curious if you think ebv has a role in these symptoms?
@@maz1702 I take levothyroxine for the hashimotos and I try to follow an anti inflammatory diet. As far as I know, I never had mono before. I don’t know if it has anything to do with it. I got hashimotos shortly after giving birth, which I heard is pretty common.
@@heatherpeterson1473 appreciate it, yeah usually ebv or in some cases cmv even if asymptomatic can trigger autoimmune disorders so I was just curious if it played a role in most cases, but not in every case ofc
Can you explain further why you would recommend a plant based diet? I predominantly eat fatty meat, dairy and leafy greens. I fry my food in butter or beef dripping and do not consume any vegetable oil. My MRI has remained stable for around 20 years. Other than MS I'm healthy and in good shape. My only symptom being fatigue.
I'm glad you are doing well, and there is definitely no single proven diet in MS. Take a look at my video on dairy czcams.com/video/Cey5muWJBs0/video.html and my video on saturated fat czcams.com/video/sZMhSIBhk5Q/video.html
@@DrBrandonBeaber
Thanks doctor. I've watched your vids. I can see where you're coming from but I have very little faith in epidemiological studies. As you know, correlation is not always associated with causation. I have tried going vegetarian, eating grains and nuts and using vegetable oil but I felt awful and developed skin rashes and psoriasis on my scalp. When I switched back to meat, dairy and leafy greens and stopped eating vegetable oil and bread I felt alot better and the rashes and psoriasis totally disappeared.
I have been trying to mentor a young mother through completing steps (= brain MRI and neurologist study) towards a probable diagnosis (according to the symptoms and the results of the spinal cord MRI) of MS or something related. Nature has been too generous with her, and a lump found in her breast has the oncologist directing her to the treatment center of Tel HaShomer hospital (including a referral for a brain scan). How can I instruct her to "advocate for herself" towards seeing to it that, if possible, both birds get killed with one stone?? Towards which specialty should I direct her? 🙀🗣️❤️
Would you feel that two lesions on the brain and one on the neck along with an episode of Optic Neuritis in one eye at the age of 30 is enough evidence to be starting on medication such as Tecfidera? The way it works in the UK is that we can only be offered certain treatments based on the amount of episodes and lesions we have had so its hard to make a decision on whether to start these treatments at this stage. Any advice would be helpful!
wow that sounds exactly like what I have experienced recently, almost identical ON + a couple lesions. On tecfidera now - did you get on some meds or thinking about it? :) Hope you are doing well.
Great video.
Just a quick thing, what do you think about the whole "start treatment right after being diagnosed"?
my doctor said start treatment asap helps in the long run for her patients that get diagnosed
the problem with MS is you don't know when it's going to hit you like a truck. Within 2 days I went blind in one eye (my first relapse). I wish I had known sooner and was on meds, it means it could have been prevented / been much less severe most likely. Meds will help prevent disability - you may feel absolutely fine now but that's not the point... it's trying to help future you. You don't know if you legs will stop working the next day, your speech, your eyesight etc etc. Hope you are doing well! Are you on anything currently?
@@__Wanderer I am on Ocrelizumab now and I have been taking meds from the very beginning, for 16 years now.
@@jacobosantamartabarral434 Ah I had the impression you were just diagnosed / were considering not taking meds. I am on DMF personally, diagnosed last year, I hope you are doing well. Ocrevus was also my choice but here in the Netherlands it isn't provided as a first line treatment sadly :/
@@__Wanderer Ocrevus is the 4th medicine I take actually
QUESTION ABOUT 5:35 (a highly aggressive chemo (cytoxan) and Predisone steroid) - this has the main key chemo element in common with HSCT , but how does it differ ?
The dose of cytoxan used in HSCT is usually very high (around 200mg/kg) whereas I can only "safely" give around 1g/m^2 IV monthly for 6 months.
I wish my neurologist would have put me on something more effective in the beginning after my first exacerbation I've been using forearm crutches I've been on Tecfidara for 7 years my new Doctor trying to put me on Ocrveus . Doctor stated to me that I Wasent treated with the Right kind of treatments in the Beginning During first major Relapse and after. I have bad right side weakness with cognitive, numbness motor fatique. Now after watching your video s I wish I would have had more effective treatment s.
You talk about watching an waiting with patients with mild MS, but isn’t current best practice to now medicate as early as CIS? For better future outcomes?
Generally speaking, yes. CIS is a shrinking category now as almost everyone previously diagnosed with CIS would now meet the diagnostic criteria for MS.
@@DrBrandonBeaber Oh good point! I’m a little burnt from progression after not being medicated for 5 years! Much respect to you, especially considering you have trialled a couple of DMT’s to experience side effects. Amazing 😊
Hey dr ! I am so confused as what to do ! I had one ms relapse ( dissemination in space but not in time ). Two lesions on my spine and that’s it . However I had 6 OCB present . I have started the OMS program that u have commented on in a previous video . It had been 6 months since my diagnosis and I feel great but my dr wants me on tecfidera . My question is .. if you were me would you wait and see .. I really don’t want to take this med . God bless
Sorry but I can't give you personal advice here.
The question to ask is: what if you have a relapse? I went blind in one eye within 2 days, I still am pretty much blind in that eye to this day 10 months later. Meds help prevent / reduce the impact of these events. Worst case on meds: you are stable for several years or longer on meds and never have a relapse. That would be incredible. But consider that you can't take back damage that is done if it happens... Of course just my personal thoughts on the matter, I am sure you've made your decision by now. :) Hope you are doing well.
I take Gilenya and hate it. But neurologist does not want me to change DMTs I wish I had this advice when I despite my misgivings my neurologist really liked Gilenya.
Can you plz do one of same, but of MG??
I'm lost.
In-between diagnosis and any sort of treatment.
Although, I think both diseases are kind of covered here....
Diet, definitely, affects these diseases!!
What B cell medication you said you would pick that you have had prescribed and had good luck with it .
Likely rituximab
@@DrBrandonBeaber yes that’s it , just looking at starting one but I am from Canada and didn’t see that on list .
Future video suggestion (unless you’ve already done one) would you take the Covid 19 vaccine (as soon as possible as being recommended by many neurologists) if you are on a B Cell depleting drug?
I would take the moderna/pfizer vaccines, though they could be less effective for someone on these medications. I did a video on a study on this topic from Spain: czcams.com/video/oAjqCmudqxM/video.html I probably would not take the AstraZeneca Vaccine unless I were higher risk for a severe case of COVID-19 because there were two cases of transverse myelitis in the clinical trial. Aaron Boster and I also had a discussion about COVID-19 vaccines and MS, and we touch on this issue: czcams.com/video/vnQqXSd8RSg/video.html
My wife had 5 leasons on her first mri and then had a second attack and developed a 6th leason less then a year later and the neurologist wants to put her on retuxumab without doing a spinal mri or spinal tap, should we wait for treatment? We don't know what to do.
Rutuximab is good
How about if I’m positive JCV?
It is hard for me to get sunlight with optic neuronitis and light sensevity!
Do I have any options?
Polarized sunglasses?