MS Treatment 2021: We don't treat Multiple Sclerosis correctly.
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- Опубликовано: 28 ноя 2021
- In this video I discuss MS treatment 2021. We don't treat Multiple Sclerosis correctly, and need to make two big changes to our approach. Click to learn more.
The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule! Hope you enjoy this video "MS Treatment 2021: We don't treat Multiple Sclerosis correctly."
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NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help educate others (and in this case, MS Treatment 2021: We don't treat Multiple Sclerosis correctly). These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos. They are just to help educate you about the condition guys!
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Thanks for the video, Dr. Boster!
Being a participant in a BTK inhibitor clinical study, I'm quite happy to hear that it might be the future of MS treatment. And even though I don't know what of the two drugs I am taking, my hopes are high that it'll help and I will have no other MS symptoms.
Thank YOU for participating in these exciting MS trials! #StrongerTogether #WeHaveMS BosterMS.com
Как ты себя сейчас чувствуешь?
I don't take any meds , I have had benign m.s. since I was 31, I will be 56 in 2 days. I pray, and take vitamins and exercise and rest. I had 25 lesions on my spine and 25 on my brain. I had x-rays done 6 yrs ago just to see how it was going. Only 1 lesion on my spine. Still 25 on brain, but doctor here in florida said that's not possible that the lesions went away. I said yes it is with God, and he's now working on my brain with the 25. Mind over matter, pray to God. Jesus heals. Miracle healer. Positive thoughts about it. It doesn't have me. ❤
One thing worse than finding out you have MS is finding out how much the medications are.
America loves to kick those that are down...over and over.
hello. i have MS from 2018 year and i am very tired. i wish all people to be healthy. ❤
AGREED. My husband died of MS last week. He was given no meds in the 1990s and started Copaxone in the late 1990s. He was first not bad enough to get a stem cell transplant, but then he we too advanced for one. He basically took low efficacy meds and passed 28yrs post diagnosis, completely with PIRA. It's all heartbreaking, really.
I'm so sorry for your loss GreySkyLady. You're not alone, we support you.
so sorry
Do you mean he died of the complications?
@@allaamrauf8214that’s what I was wondering
I was diagnosed with MS due to optical neuritis and some inflammation in the brain.
I decided to totally ignore anything the doctor said/prescribed, and went about my life.
That was 6 years ago and I am normal no symptoms whatsoever.
I was diagnosed in 1992 and was kicked out of the door and never had any treatment for my ms,i was only offered steroids for relapses which i refused,i chose to just get on with getting over them myself.I was never offered any dmd when they became available.I am absolutely disgusted with the lack of care and feel so angry with nhs for leaving me to struggle these last 29 years,I have no faith in the nhs at all.
What is nhs
@@kandykone88 NHS is our national Health service in the UK
My situation is similar to yours. I was diagnosed at Mayo in 1999 with primary progressive Ms. At that time the medications they had for MS did not help the PPD type . It is only in recent times that more is known & understood about primary progressive MS & there are various medications available. I made a request for an appt with Mayo this year wanting them to determine what treatment would be best to begin with. My request was denied due to the abundance of requests they get each year. They didn’t say but I suspect age played a part since I am now 81, but a young 81 I might add.
I’m medication sensitive so there’s like no options for me when it comes to treatment, I either suffer with or without medication. I was sort of brushed off by my neurologist at time of diagnosis he was arrogant and didn’t want to listen, and I have battled it unable to walk or feel my legs after work etc. it’s terrible so I wish you the best ♥️
@@colleenpaulson3821 There is only 1 FDA approved medication for PPMS-OCREVUS, Any Neurologist with a brain can prescribe-Mayo not required.
I have MS for almost 9 years. I feel i spent so much time in first line medicines bc i was "fine" and now even taking Ocrevus, i need a rolling walker, i have disphagia and bladder problems. I'm not even 30 yet. Yes. We need more efficient treatments as soon as we are diagnosed.
Agree Dr. Boster. I’d love to see more enhancement on genetic and family history with MS. My great aunt, uncle, me and my 2nd cousin all on my Dads side have MS. Early detection like in cancer would help greatly in curbing the disability and possibly MS having no effect on your life, that would be awesome.
Dr. Boster, Thank you for your caring interest in MS. Your innovative approach to MS care fascinates me as an MS patient for 65 years, diagnosed in 1958. My 50-year teaching career included an eclectic mix of students, subjects, travel, and MS. Vitamin B tablets after each meal with 8 ounces of water and resting a lot, steroids, stem cell injections, and Ocrevus infusions after 75 were the medications I used. Through positivity, focused goals, exercise, nutrition, music, laughter, prayer, medication, meditation, motivation, visualization, and purpose, my life with MS had peaks and valleys. I write freelance and will publish a book, Multiple Sclerosis Success Guide: 12 Tips to Energize Your MS Life, about my MS journey in March 2024 to coincide with MS Awareness Month.
Thank you . i now have a new doctor in nyc at nyu multiple sclerosis center. He found i was completely treated incorrectly. He found lesions on my brain also i don't have rr anymore it has progressed . He is checking all my blood levels to see what meds will work with me. I cannot thank you enough.
Dr. B I totally agree with you, I was diagnosed in 2019 my first dmt was and still is Ocervus. My insurance did not cover the first round, that's when Gentech foundation stepped in to cover the cost of the first round. I have adjusted my diet as well, which I believe we need to do everything in our power to limit Inflammation. There is no one fix all
Your comment on “smoldering” MS really hit home with me and described my MS to a T. It’s difficult for me to pinpoint when I had my first attack but I have large spinal lesions on my spine and have progressively gotten worse but never really had a relapse or remittance, now diagnosed PPMS, but in an Ocrevus study (regular dose or increased dose).
I appreciate your videos and knowledge Doctor Boster. I would love to see a video on using diet and lifestyle changes (in addition to medications) to quell inflammation. I truly believe many patients could live much better with their MS if the medical community could up their efforts on this part of patients care and coaching.
Yeah they could. Boster has done videos on this stuff before many times. But you are right, we could use another one ASAP!
1000% agree
Fully agree with you 🎗
Coaching like that does not come from pharma training. I am on a meat based, high fat, high protein, whole food, ketogenic diet now for 3 months.
For 2 year I gave had neuropathy in all 4 limbs including burning. The last week that burning has 95% gone away.
No DMTs. Only supplements, Cymbalta 90 mg and barely any gabapenten, like 100-200 mg currently.
I decided a few days ago to stop the supplements that were specific to nerve support just to test it without for a couple weeks. I will add them back, but I wanted to see what their impact was.
So far it seems that the diet is the thing that suppressed the burning. We will see. People in my circles doing the same though for many different reasons and diseases are also seeing less symptoms and even remission of autoimmune diseases.
I know it's not a guarantee, but I've done this before and cleared up many things.
Pharma will tell us to go plant based. Doctors that stopped obeying pharma are going meat based and seeing the results.
I'm not a medical professional, but I do get better on meat based keto.
Thank you for this!
Thank you for taking time to help educate us!!!
Thank you so much for this video Dr Boster. As someone who is strongly advocating for myself to get HSCT in the states with an early diagnosis (no progression yet showing on my MRI’s even though I have new symptoms), it is awesome to hear a doctor talk about supporting this as an option very early in diagnosis. I would love to hear your personal perspective on myelo vs non-myelo HSCT. There does not seem to be a consensus on this and it makes it difficult for those of us researching what is the best treatment.
Thank you Dr. Booster, I appreciate your videos so much.
I certainly think the “smoldering” nature of MS fits. Diagnosed in 2004 and been on copaxone/tysabri/ocrevus/Lemtrada and for the most part free of relapses. But I’ve progressed a lot slowly over time. It always feels like “hey you have had no relapses! hooray! everything is under control.” But in reality things have changed a lot.
Kevin, Totally agree! I was diagnosed in 2003 & came off copaxone 6 months ago. My condition has deteriorated over the years & as my recent MRI showed NO “active disease” my neurologist has said no further treatment required 🤬 I Take it he thinks I’m cured 🤨
I had that issue as well, until I found out I alsao have paoriatic arthritis...which the rheumatoloist refused to diagnose since I had a false negative (she read as false positive--she's from the University of Minnesota for F*** sake!!!) which was confrirmed by my dermatologist
Just more proof that doctors aren't gods, blood teats aren't always conclusive, knowing about your body is incredibly valueable, and peer-reviewed research can change your life. IJDK_SMDH
This is why MS is so weird and i think no one understands it. You have listed some of the most effective DMTs, but i haven't been on any of those, I was diagnosed in 98 and didn't start an a DMT (Rebif) until 2012, but i don't show signs of progression. I'm now on Tecfidera and may transition to Ocrevus, but i think of course i will progress due to the length of time i have had MS.
Hey all! same with me Dx ms 1984. did old abc injections for yrs-had no noticable activity for 25 yrs- bout age 25 to current age 52. still keeping informed with Dr 😳. ms is so dang tricky!
@dahbajanman7044 what were you doing for your health for 98 to 2012 before starting dmt? Why did you start taking a dmt?
I was diagnosed in '96 and had to ask to be on an DMT . I was on Avonex first, when I failed that med I moved on to Rebif. I still relapsed about every 3 years on these DMTs. When I became non-compliant I had the worst relapse since my diagnosis in 2012. I now have at least 30 T1 lesions from drugs just not being effective enough back then. I joined the Ocrevus trial from 2012-2020, I've since been relapse free for almost 10 years now. I've been NEDA since 2015. Currently on Kesimpta and still doing well. I couldn't agree more with your assessment. Start early, start strong.
Yes!!! I am thrilled that you are looking in this direction. Clinicians like you are the future for making new approaches available - HSCT, BTK inhibitors, anti-viral meds (for people with EBV). The goal is to stop PIRA and to preserve brain volume so that people w MS live longer without disability. Economically, there is a strong case here for aggressive (expensive) therapy up front - giving people a shot at longer productive happier lives, parents who can raise their kids to adulthood etc. Go Dr Boster!
My favourite video you have ever made! Chapeau.
This is a great idea. Hopefully, insurance will follow. The first year my diagnosis was tough. Insurance wouldn’t even approve the medicine my doctor recommended until I failed two other drugs.
Thank you, Dr. Boster! Agree with the title. IMHO: Until we find what's causing CNS inflammation in MS & treat the cause(s), the cure will not be found.
I started PEMF therapy for pain and it has been life changing!!
I was diagnosed with MS a few years ago and of course I knew very little about the disease. My neurologist treated my symptoms with a very aggressive anti-inflammatory treatment. As I have learned more about my new life, I do what I can to continue on with anti-inflammatory regimes.
I have MS, fibromyalgia, chronic fatigue syndrome, brain disease trigeminal neuralgia and a host of other diseases. I think Dr. Boster is not only more than qualified but has to be a compassionate individual to spend your time this way. Thank you.
Because I have so many other severe complicated illness I don't know if I agree with an aggressive approach such as this. But I have my other things to be concerned of, not just MS.
You're absolutely amazing, Thank you for sharing these videos. I have watched every one and I am always left with hope, compassion, and gratitude that there's someone out there thinking outside of the box .. words are not enough to express my gratitude...Thank you Dr. Aaron Boster💯🎯❣️
Thank you dr. Boster very much for this !
I was diagnosed with multiple sclerosis in 1991 when I was 18, I fought for 8 years to get on one of the early DMDs. I have been on Copaxone (or the generic Brabio) for 19 years (still on it) and was part of a study on the NHS called the risk sharing scheme. I don't seem to have had many relapses since. But I find that doing chi kung has helped it a bit.
I actually get the blog by Prof G Giovannoni regularly emailed to me. I signed up for it years ago. It is very interesting with useful information.
But your videos are also interesting and useful.
Thank you for this one.
Best wishes
So good to see this post today! I have wondered about this very subject - aggressive treatment to prevent new lesions, but also what to do to address the other symptoms that periodically appear and/or how to promote actual healing of lesions. I appears that there is reluctance to give more than one treatment at a time, since each therapy has side effects and hasn't necessarily been studied for interactions with other common therapies, especially not in the long term. Still - there can only be benefit and cost savings to personal health and the health care system if people with MS don't acquire disabling conditions in the long term, if they can be fully productive and healthy. Bravo for sharing your thoughts.
Thank you Doctor! This makes me optimistic with the future with Ms. Definitely will have something to talk about with my healthcare team 😊❤️
YES!! I participated in an MS study, I believed in 2017, where your exact approach was being discussed.
I am grateful that my doctor agreed to hit my MS with Rituximab as our first treatment. I am hoping it makes a significant difference in my disease course.
I would be fascinated to see treatment the way you described: HSCT/Lemtrada first followed by BTK inhibitors. Though I do wish they could make Lemtrada lower risk for significant side effects.
DR BOSTER YOU THE MAN
Really thank you, real scientist!!
Love to hear content like this, research and possibilities.
Are there studies into clearing debris from demyelination process?
Great lesson again Mr Boster
Thank you for being so active on RUclips! Your videos have been very helpful for learning about MS. 💖 I would love to hear more about the BTK inhibitors you mentioned and how it might treat MS after a monoclonal antibody treatment.
Same here!
Dr B: I appreciate your videos SO MUCH!
I have learned a lot from you and continue to do so. But this video…. I CANT STOP LOOKING AT THE “monster egg” !!!!!! 🤣🤣🤣👍🏼
Had an ms scare years back, didn't get diagnosed but had many of the symptoms, ai found Terry Wahls and started keto, my nerves healed and I'm mostly symptom free, it was miserable but now I call it the canary in a coal mine
Awesome video! I couldn't agree more. I wish neurologists would watch this video and start implementing your ideas. I had HSCT for MS 7 years ago and my MS progression has stopped.
Hi Dr. Boster I always love watching your videos. Do you have any suggestions for someone with JC virus who is scared to death about PML? Thanks!
I was diagnosed via MRI only, I did early aggressive treatment with Tysabri for a year and then swapped to Ocrevus. Tysabri helped stop my disabilities fast and helped decrease one of my spinal lesions. Smoldering MS makes a lot of sense as I haven't been relapsing just over all getting worse over time, I was only diagnosed a year ago and in the time I had no flare ups but my back has caused me some of the worst pain in my life and I have to use a cane now.
Sounds very good to me Doctor B. I do preciate your time Sir! Thumbs up video ~John
I agree with your line of thinking. We need to get all neurologist/ MS specialist on board with this. So everyone gets treatment aggressively initially. Along with more pharma/ scientists focusing on these types of treatments. Much love ❤️ my super opinionated Dr. #Wehavems
I love your passion for ms therapy. Thank you for that, I wish that were the case for all neurologists. I feel in my situation that there's an elephant in the room, and that being poor communication between physicians and their patients, where what we share isn't taken seriously, and I think that it might be due to some Dr.'s not fully understanding the severity of what we experience vs. what they read in a book, with no way to understand on a personal level. Often we're treated like were lying, or that we're over reacting. To which I believe can trigger more issues. Because just like physicians have a gap in understanding, the average patient also has a poor understanding of what's going on inside scientifically. I'm an unusual case in that I worked in many medical facets prior to diagnosis, and knew at my core something was very wrong, and no one would take me seriously untill I was a full blown disaster. That being said, I've been researching immune/neuro conditions likely in an obsessive manner from a place of fear. Leading to more inflamation. There's a million things I could touch on, but this likely isn't the time nor place, however, I was wondering if you were familiar with Gabor Mate's work, and his thereories involving the emotional components?
The wait and see model brings a big bill I'll have to pay for the rest of my life.. diagnosed in Aug/2000, currently in SPMS, I'm 46 yo.
I am currently in Yr1 Wk2 of Cladribine. It took me a couple of months to feel comfortable with the idea of using this, but I am now very confident that it was the right decision, despite the fact I am currently struggling with the side effect of fatigue. To get through, I’m just resting ‘hard’, and I like to imagine the tablets fighting strongly against my MS and bringing about positive changes as a result
I worry as neurologists I have seen want to see MS go extremely wrong before making any changes although I feel the negatively changing MS that doesn’t show on MRIs. Extremely wrong to me means I will have permanently damaging life symptoms and complications I don’t need. I strive to live the 4 for 4, a healthy anti-inflammatory diet as that is the best anyone will do for my RRMS.
What diet is that?
Deborah Noyes, I too have seen doctors who want to use the "escalation model" where they wait for progression to try something more effective. In the United States insurance plays a big role in this decision. It's exhausting but please continue to advocate for yourself...there's a way to get the best care. Definitely not the easiest way, but it's worth it
I guess I'm terribly opinionated too, because agree with you wholeheartly.
I would like to see a video for those with both MS and MG. Ocular symptoms are getting worse nearly daily.
Honestly this hits me so hard. I’ve only had MS for a while (diagnosed in 2018 when I was 24 and now I’m 28). Been on Tysabri but I’m clearly getting worst. Was just in the hospital for a few days because I couldn’t walk, and I can barely hold anything anymore. I have a wheelchair now. But because my MRI’s are good, my doctors just say everything is fine and I leave every appointment not knowing what the point even was of showing up or getting the expensive MRI’s just to be told everything is good. Idk how my neurologist suggests I maybe can’t work full time anymore at 28 but still say that my MS is controlled and everything is working as intended.
What about natural foods that help rebuild the myelin any of that help?
Sorry to hear this I hope we can find something soon
Dear Dr Boster,
thank you for the video, although I must say it made me quite sad, because I certainly will not have access to these new BTK therapies which you suggest (I live in one of the Europe's poorest countries). But thank you for the effort you put in making these videos, because I certainly learn more about MS from you, than from my neurologists. Stay healthy and safe
Thank you for your sharing your knowledge and passion.
30 plus years ago I was diagnosed with "benign" MS. Today I can barely stand for a minute or two and I use a motorized WC. Smoldering MS is an accurate descriptive of what many MSers are challenged with and it certainly describes my disease process. It took 10 years for my neurologist to prescribe Avonex but my MS continued to burn its way throughout my spine nonetheless. I changed neurologists on several occassions and was put on more effective meds but my MS continued to smolder. I'm on Ocrevus now. I hope your wish for a more aggressive treatment of MS from the start becomes a reality. Smoldering but hopeful. Tx
That's what they told me, benign,,what does that even mean???
Thanks S Marc for your response. I am currently on Tysabri and moving to Ocrevus soon, but I would agree that despite not having any relapses, my MS is gradually deteriorating. I am hoping Ocrevus will slow down my decline.
I agree. I really had to work on my neuro to get her on board with leaving Glatopa for some more effective. Eventually, I was a broken record. I want the most effective medication to fight my MS.
I tried to go the diet way for the past 4 years (Wahls style all anti inflammatory) I think I executed it 95% of the time, but it was hard to pull off while having an active lifestyle. My latest MRI shows a lot of activity. I've become used to the blurry vision , tiredness, and vertigo. Now however I'm preparing to go on Ocrevus Treatments. It's nice to hear about new treatments. I'm not a fan of tampering with my immune system. I never get sick. I even caught Covid unvaxxinated and it wasn't that bad for me. I think it was milder for me than what my friends went through just getting the jab. Now that I may suppress my immune system (while having the JC virus as a factor) I'm doing as much research as possible to see if anything new exists.
I like watching alot of your videos. I agree with you about inflamation. I have seen that less inflamation helps my ms first hand. I had to find a wellness dr & move away from the traditional neurologist way of just treating my symptoms. My dr put me on peptide shots daily. Also I took a food intolerance test. By taking the shots & not eating the foods that irritate me my inflamation has gone way down! No ms is not gone but I feel a lot better. I have maintained my mobility & my clothes fit better!
Thank you for this video Dr. Boster. We are seeing a new neurologist and I hope he is open to discussing this philosophy. We want to consider aHSCT when disability and number of lesions is still low.
Thanks for this video. I have super early ms.
You got this!
I wish these upcoming meds were available now. I was diagnosed in 1990 and was literally just sent out the door with best wishes because there were no meds. I eventually was on Avonex and now Gilenya. I’m doing ok but I definitely have “smoldering MS.” No obvious exacerbations but very slowly progressing disability. It’ll be interesting to see what new treatments come out!
I hear you! At 47 with over 20 brain lesions and atleast 10 spinal cord lesions, I think any big changes to MS treatment are too late for me. I am disabled from MS and feel so unwell on a daily basis despite being on Ocrevus. I wouldn't wish this on anyone and do hope Dr. B is right and that MS can become boring for future generations 🤗
Hi Francine so great to hear you're still doing pretty well especially since you were diagnosed in 1990. I turned 40 this year and wonder if some of my mild symptoms are MS or age related. Any thoughts?
What age were u when u got it and how old are u now may I ask
Nice video, though I don't think we can treat RIS with highly-effective therapy with current technology because many people with RIS don't go on to develop clinical MS at all. Also, I think the potential for misdiagnosis in people with no clinical symptoms of MS is tremendous. I routinely undiagnose people with "multiple sclerosis," often immediately suspecting the diagnosis is wrong while reviewing the MRI prior to even speaking with the patient. Maybe with better testing (central vein sign, etc). Also, you could argue that RIS with classic brain lesions and spinal cord lesions is a different entity which requires treatment, though I am not entirely convinced.
I agree with this theory. I was diagnosed 8 years ago and within 6 months I was given lemtrada. My doctor decided to see how successful it would be in early stages. I had gone undiagnosed for about 5 years so I had significant symptoms and pain already. (This I accept I will always have to deal with as the damage is already done)
I had 4 rounds and so far no new relapses and no treatment for the past 4 years. I have zero progression and feel really positive for my future.
Can you do a video about HSCT? I'm considering this option more and more. Thank you for all your work with these videos.
🎉🎉🎉yes. Pleaseee
Hi! Your information filled RUclips‘s are immensely helpful, making the MS learning curve far easier to tackle … thank you! Wondering if you might be able to create + post a RUclips specific to people diagnosed with active RRMS in their 60s, which DMTs are effective and should be considered along w/ risks? Interestingly,, interestingly, I was diagnosed with pars planitis at age 29, recall having occasional unusual vibration sensations in my neck (when I turned my head) in my 30s and 40s and was diagnosed (brain/spinal MRIs + LP w/ 13 Oligoclonal bands) w/ RRMS at 63 … w/ MRI evidence of transverse myelitis at 60 (undiagnosed at the time.). Treating early + efficaciously … is this advice for 60yr olds w/ active RRMS or active SPMS?
Dr. Boster, this treatment approach certainly has the potential to reduce the amount of damage caused by early disease activity and seems like a no brainer in my opinion. Do you think that this is a change we may actually see in the coming years?
Dr. B please do a seminar please we, us, MS warriors are are literally fighting for some relief especially those of us living in the Midwest, but right now anywhere due to this weird unthinkable climate.
Dmt's are preventing new lesions from forming, but not healing the damage already done.
Thanksfor the Video Dr.
Is HSCT a mainstream treatment for MS? Asking because Stem Cell treatment is very costly, Insurance (here) do not consider Stem Cell treatment as an accepted clinical treatment for MS
How can we get HSCT??
Colloidal silver works great!
I have gotten 2 diagnosis and my current neurologist put me on Aubagio. I’m JCV positive so I have to be carefully about what I’m on. I have bad neurological problems. I feel like I have dementia most days. I feel like my neuro could care less. It would be great to find a neurologist like you
I was diagnosed with MS January 2020, I finished my first round of Mavenclad April 2021, all is well, no new or active lesions since diagnosis
Hi Suzie! Glad to hear your doing well since Mavenclad. My doctor wants me to take it as copoxone has stopped helping me. How did you feel when you took it? I'm really nervous as i see the side effects etc. It says like your immunity goes down for like 6 months? Just looking for advise i e. Your experience with it ? Appreciate it
I agree on reversing the approach on treatment, also because a very strong therapy would be better tolerated in a young or relatively young person, instead of an older person already beaten up by years of "bland" therapies and progressing disability. Thanks for sharing your opinion, hopefully it will be considered in the medical community
"Smoldering MS" - sounds terrifying, frankly.
Hi there! We went through lemtrada together in 2017 and 2018. I show no progression. Should I consider SCT? Also my sister Liz is loving having you!
Dr Boster can you put the link up on the article you were talking about? I'm on tysabri..
Thank you for this video
Smoldering ms is always on my mind. Maybe it's because I just feel so incredibly crummy despite doing the 4 for 4 LOL
Good morning ☀️
How do you treat a disease that symptoms varies from person to person and progresses differently from person to person?
So doctor i guess as first medication on mavenclad i choose wise !
I would like to see more discussion around treatment for MS long-timers. I was DX in 2001. (We were lucky to have the CAB meds.)
There is rightfully much talk about the newly dx and early, powerful meds. But then what? We’ve gone from no meds to quite a few meds in just a few decades, but where is the accompanying progress In management for those of us further along the path? Just to be clear, I’m not talking meds, I’m talking about ACTIVE management and enthusiasm for the long term.
I’ve always thought that with current DMTs we are treating the effect and not the cause. Very important to stop the damage caused by attacks/inflammation, however, we still need to get to the cause…..
Thank you for the information I have had MS since I was 14 but was not diagnosed until I was 28 and had a very bad relapse. I was on rebif it didn't work then tecfidera that crap is for the birds it made me so sick so I stopped taking it after taking it for 3 years I just couldn't do it. I would love to have something that would actually help and not make me sick.
I can’t wait to learn everything about this…my Son is going through so many ups and downs…do you have a group that would be beneficial to connect with and talk too?….
I am 74 years old and was diagnosed with MS about 5 years ago. Began taking Aubagio. Seemed to be working until last year when my yearly RMI showed a new lesion. Took the first course of Mavenclad last June. For the past few months my fatigue, imbalance and unpredictable grip are getting progressively worse. Saw my neurologist and have appointments for blood work and an MRI. Would you recommend continuing the mavenclad or hitting it with the stronger meds you described in this video?
Can you do a video on what is the best treatment plan for those in their wiser years? I know it probably depends on if they are RR, secondary or primary....
I'm 43. I hope, God willing, the care will be even more advanced for me by then... but what is a good plan now.
All 3 of the women in my support group are off DMT. Is it good care to be on a less effective drug if you've been stable for few decades and is it different if your ms is aggressive like mine is
Thank you!
I was diagnosed when i was 17 now im 25. I havent had many issues until now
Thank you Dr. Boster. I'm 28 yo woman and I just got diagnosed with MS. I am considering asking my neurologist for stem cell transplant. I am early in the disease (as my neurologist say, but I want a second opinion - of which I am working on) but I want to be pro-active and look at this treatment to possibly stop the progression. Maybe wishful thinking like a lot of MS patients.
Yes. I have been newly diagnosed as well and I just want to start off with some STEM treatment right away. I don’t want to wait until I have 40 lesions.
I wish they would approve stem cell transplants for MS (where insurance would cover it)…they pay thousands of dollars towards prescriptions where those of us with “mild” MS could potentially be Drug free after a stem cell transplant…you would think it would save the insurance company and the patient money in the long run 🤷🏻♀️
I apent three years wasting time on Copaxone and Tecfedera in my 20s, until I was approved for Ocrevus, which has been a life saver. Unfortunately, the partial numbness in the left side of my body, as well as the lesions on my brain and spine, will never be recovered and is the result of my medical coverage specifying that I needed to be treated with outdated MS treatments for years prior before Ocrevus.
Dr. Boster, what stem cell therapy do you recommend and where does a patient get it?
I wasn't diagnosed for 20+ years what is the best treatment for patients like me?
What do you think will lead to the changes that you have mentioned? Do you think they will happen? Insurance companies play a big deal with using the low eccafacy medications.
I took tysabri for 5 years but as you said I still slowly declined without axerbations. I think your describing me exactly. I'm 68 and tied to wheelchair. I have baclofin pump and foley catheter. Life is tough but I have little pain just major frustrations. My big worry is my 40 year old daughter has ms already uses walking sticks, and complains of brain fog already. She is on ocrevous. We live in Oregon. Is anyone doing study of is ms hereditary. Bob
I love your work on utube .
Does this also count for CIDP? Thank you!!
I have heard people are resistant to being put on Ocrevus. That is what I am on and it works well for me. Is there a reason people are hesitant about being put on Ocrevus?
Can smoldering ms show up on annual mri's? My neurologist who is a Ms specialist started me on kesimpta in August/2021. I was diagnosed in July/2021.
What do you think about mavenclad medicine for MS?
İ just discovered Dr Boster and very happy to do so. İ have been on Gilenya- now 6th year. Prior to that İ had very very bad attack when İ stopped taking medication for 3 full years. On Gilenya İ never had an attack- prevuoudly every 6 yrs after age 23.İ changed location now, new doc wants to put me on Ocrevus. Last MRİ no active lesion. But lots of old lesions forvbrain, neck, sone on dorsal MRİs. Brain vilume loss. But, Good physical test still which surprises DRs. Noone would see i have smt wrong looking at me. Good blood tests. Should İ change from Gilenya to Ocrevus- more efficacy drug NOW or wait? Dr left decisuon to me. İ am worried if smt very bad unexpected happens if İ switch now. Any answer would be appreciated. Thank you.
We need conclusive evidence based research that demonstrates the effect of SSRIs on the lymphatic system. Are we prescribing Zoloft for MS in tandom with MABs only to learn that they work against each other?
Yes please 😮😮😮😮
Could BPC-157 and TB-500 be good options for this protocol?
Hello Dr. Boster, have you ever seen a patient with iridocyclitis and cystoid macular edema (or another opthamologist called pars planitis) as the first presenting symptom of M.S.? The reason I ask is I had that in 1985 and it has never gone away (it has now been referred to as "smoldering" pars planitis), and in last few years have some form of optic neuritis I believe which is going to be evaluated in a month by a neuroopthamologist in Kansas City after 2 bouts of COVID sent me to hospital for an M.S. relapse and optic neuritis. I was "officially" diagnosed with M.S. in 2007, and thinking my M.S. actually started in 1985 with the iridocyclitis and CME. Thanks for the videos!