Multiple Sclerosis Vlog: Most Neurologists Will Disagree With Me!
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- čas přidán 14. 07. 2019
- In this video I share my opinion on where the future of MS therapeutics is heading. Most neurologist will disagree with me.
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!
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COMMENT with your thoughts and questions below! I look forward to reading and responding!
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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 education others. 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!
Dear Dr. Boster.
I think you’re certainly on point with regards to detecting and treating patients with RIS before they develop symptoms, and I would’ve absolutely agreed to the treatment if it was offered to me considering how bad MS affected my mother.
I think you’re on the leading edge for the development of new more sensitive criteria to detect and treat MS.
cementra2007 thank you Cementra! #WeHaveMS
I absolutely concur, there are far to many who don't believe in treating a Clinically Isolated Event.
What should I do with wobble legs too feel better
What's good for wobbly legs
@@michorote106 I don't understand why he hasn't answered your question. My doctor says there currently isn't any treatment for this symptom. I have PPMS.
I find that doctors aggressively treat most conditions. Not sure why they don’t aggressively treat MS
There should be no watch and wait PERIOD. From mild to agressive disease high efficacy drugs from onset should be standard IMO. Risk/Reward out weighs the cons this is 2019 we have ways now to get ahead of it and monitor.
Conversations need to be had with doctors and insurance companies so that can see real hard proof of how these medications can truly improve the quality of life of a patient.
I was a watch and wait program. It took another small lesion for my doc to act. So I could have had it or did have it since 2008 instead of waiting until 2013.
@@LisaSmith-ql4jk How are you feeling now?
@@mattz5275 I feel like I am the best I am going to be. As with everyone else I have good and bad days. Yet thankful that I am on Tysabri.
@@mattz5275 Most days I am good.
I wish all neurologists would watch and learn from you. Great video.
Yes, yes, yes!!! I was one of the watch and lets see what happens. Well, now, I’m screwed. I feel horrible! HELPLESS! There doesn’t seem to be any help for me now. I am only existing. Why isn’t there Ohio Health type places everywhere? I didn’t realize that a person could suffer so badly for such a long time. This is one hell of a disease!!!!! Thank you for speaking out. We need educating! We need to be able to make a big part of our decision on our health. Had I have had a clue as to what has happened to me, YES, I would want to be treated with the BIGGEST guns out there. This prolonging this crap SUCKS!!!! 😢
I love this channel. In 7 hours time I will be in the MRI machine to confirm my diagnosis. I will receive the final results in 7 days. I have always known something was wrong, but as a 48 yr old male we are too stubborn and proud to admit our failures. My advice is if you don't feel right, get it checked.
You are right on the money! This is what I have said for years. When MS is detected, hit it with a firehose NOT a garden hose.
You are a blessing to not just your patients, but MS patients around the world. Your passion for helping us is incredible. There is no way we can ever thank you enough for all you do for us.
Dr. Boster,
I agree with you 100%.
The biggest problem lies with the insurance company's wanting to start at the low level/cost meds to start.
My daughter has a round of MRI's July 30.
She does not have MS but has minor sensory symptoms in one leg that has dissapeared now but I believe if the MRI shows anything then its top shelf.
I will share this video with her only if needed.
Thanks Dr. Boster.
Tysabri has a program to help pay for meds
I agree completely. I’m 49 and on ocrevus. I’m pleased that my neuro started me on copaxone within three weeks of diagnosis (in 2004 - the new DMTs were not avail) and then switched to tysabri in 2008 and then to ocrevus in 2018. Escalation, yes, but based on new drugs being available, not failure of another med. I have 20 and 21 year old daughters and if they were having symptoms, I would make sure they started aggressively. Yes, risks are real, but so is my disability, pain, difficulty with employment, relationship problems, bowel and bladder dysfunction, depression, etc. I’d do about anything to spare them from these challenges and I do understand the risks involved.
I hear you Kevin. I wish you better days. 😉💛
Heal well Kevin. 👍
Diagnosed in 2016, started meds in 2019. Wish I knew back then what I know now. Start meds ASAP!!! 💖🇦🇺💪🏼😉
I 100% agree. I was dx'd last july and Ive been "symptom free" for a year now. i had tinglyness and my arm would stop working, thats what prompted me to get an MRI. my neuro only tells me I have many lesions, which had been silent for a long time til that one episode. he immediately put me on Ocrevus. We had to fight with the insurance but I love treating it aggressively to keep my lesions clinically silent.
Also I work in a retail pharmacy. I am exposed to all kinds of sickness all day. I have not gotten sick once since starting Ocrevus. Its possible to still have a good immune system,
OMG! As a PPMS patient diagnosed in 2014, I just about worried the stew out of my Neurologist as soon as Ocrevus was approved! I ended up waiting about 9 months before starting treatment, but that was ONLY because of my comorbidities (Sp?). My doc wanted to be extra careful about monitoring my other organs first. Let me tell you, when I was told in August, 2014 that there was NO DMT for PPMS I just about blew a gasket. Until you’re faced with “nothing we can do but treat some symptoms”, to make you appreciate having choices! When my brother was diagnosed with RRMS in 1990 or ‘91, there was nothing for him to try until interferon. It was so hopeless that he began giving away all of his possessions! I wish there had been more that could have been done for him. Very sobering. I’m with you; throw everything, including the kitchen sink, at this disease if there’s a chance to impact your life for the better.
HELL YES, we should treat MS with every thing we have as soon as there is even an inkling of MS. My aunt had MS when I was a kid. She was very young, less than 39 6ears old when she took her own life in the 70's. She couldn't handle the pain, the loss of mobility and dignity. It was horrific. To think there are doctors out there that discourage MSers from fully utilizing such awesome treatments we now have is simply barbaric IMO!
My 21 year old daughter was just diagnosed with MS in May 2019. She starts Tysabri later this month, hopefully, next week. I am forever grateful she has a neurologist that understands the awesome new meds available. All risks with Tysabri were explained to her plus there is tons of information online, especially here. Thank you Dr B for speaking your mind! It is my hope other clinicians follow your lead. May God bless you
From a patient perspective, it pays to find out which centers treat early and aggressively. We now travel 500 miles twice a year for an infusion at a center that advocates for the highly effective treatments AND knows how to fight insurance companies to get it. It's a PITA, but the peace of mind is priceless.
Watching this video reminds me of my own MS journey back in the late 80’s / early 90’s . Oh well 😔 , wait and see cost me my quality of life . I am thankful that new patients today will be much better off than myself .
As a individual who recently (as in last month) diagnosed with MS, I value this line of thinking. I believe it is very common for people to think in the "now", rather then planning for the future. When dealing with something chronic, like MS, that isn't good enough. Both doctors and insurance companies need to start adopting this model when dealing with patients with chronic life long illnesses. Hearing that you and those who practice with you feel this way gives me hope for the future of MS treatments.
I am fortunate enough to have a very forward thinking neurologist who had no problems with me wanting to go in with "Big Guns" and start Ocrevus right out of the gate. To me, any side effects outweigh the "side effects" of leaving my MS room to cause more damage that will hurt me 5, 10, or 15 years down the line. As you said, be the most awesome version of me, as i can be, for as long as i can.
Danielle Waszak may I ask your symptoms prior to your diagnosis? Was it sudden onset, or how was life a couple years prior?
If it was breast cancer, would you want anything other than the best meds available! No!
The more I watch your videos, the more confident I am in my own MS specialist and treatment plan! I started Tysabri earlier this year.
A little back story: I'm in my late 20's with "widespread" MS in my brain, neck, and spine on top of a seizure disorder. I spent 10 years visiting different doctors and neurologists. I was actually starting to believe this was all in my head. With each year and new that came and went, I felt that much more hopeless and crazy.
About a year ago, I fell across your videos while researching online. You described so many symtoms I had felt. That's when I knew my doctors could be wrong. This isn't normal and it was so important to find someone willing to listen and take me seriously.
The thought of MS is still very scary, but thanks to you and my new health care team, I feel more comfortable with the fact that this is for life (for the foreseeable future). This doesn't have to be the end all be all!
I just really wanted you to hear that you played some part in my diagnosis last year. Thanks for spending so much of your time helping others with your channel!
P.S. - My boyfriend thinks you should address your followers as "Boster's Fosters". A little too weird? Yes, I'm aware, but I'm humoring him right now 😄
P.P.S.S. - If you've read this far, I had random question. Have you come across anyone diagnosed with polymyositis? My mom passed away from this in 2005. It's not a huge fear of mine, but I'm curious if there's any symptoms I should look out for. So many of them are similar to symptoms of MS. I'll be asking my neurologist this question during my next appointment, also.
If you're unfamiliar with polymyositis, that's okay! Just disregard the question!
Thank you, again!
You are right Dr. Boster. Treating as early as possible and aggressively MS is the way to go.
I wish my neuro would have done it. I believe
I could have been better than I am now.
Bring on the SWAT team! I am with you - hit hard & fast. Thank you, Dr. Boster. Thank you so much for advocating for us!
I agree with you 100%. My local doctor believes in only lookong at flares and spots, then treating on an escalation scale and not treating us old people , even the super active and busy ones like me. I had no new spots but going down hill and falling constantly including head injuries and fx hip. Second opinion doc started Ocrevus- game changer...only 3 mild falls in a year rather than 3 per month, no head injuries, and at 68, doing super, working, involved in everything and I can now even TANDEM walk!!
Yes please... 3 neuro surgeons, an opthomoligist, chiropractor, EMG study and my primary all say this screams and will be MS... 3 neuros say no it doesn't work that way. The 3 NEW glowing lesions are just age spots just like the now black he spot. 3 yrs and numb face, lip, tongue, fingers, arm, (parasthesia) drop foot, insane Dysesthesia, essential tremors now in both hands, jaw and voice. My new superpower heat intolerance, and not feeling temperature in fingers (grabbing cake hot pans, hot water isn't ANYTHING, literally)... Even an occupational therapist says demyelination disease. But my Ms specialist in Utah at UofU says unlikely MS too early and symptoms I need to rule out Parkinson's. 🤦🏼♀️ ... How in the last year-and-a-half can there all of a sudden be 3-4 "age" spots juxtacortal, in parietal both front lobes. Accompanied with increased symptoms... And the only thing I can look forward to is making fun of my new superhero powers, learn, research and wait.
I understand meds for MS are extreme. When you question the neurologist on why do all of these neurosurgeons EMG study doctor ophthalmologist say this is going to be Ms it's just waiting to rear its ugly head in full force, the neurologist says that's not how it works you're fine theres no explanation for what's happening... But yet they're so willing to start you on muscle relaxers for the numb weak feeling leg. Definitely needs to be a change in how neurologist work with and FOR their patient. Your patients are lucky to have you
Perhaps change doctor?
Diagnosis aug 20/20 was placed on predizone drip for 5 days, sent home with nothing, have left foot drop, both calf muscles have spasms, left eye optic nerve lesion with many others says the ophthalmologist, waiting for my neurologist so my team is complete , hoping it’s coming soon, I totally agree with you, great video!!!! Thankyou.
It's funny as the neurologist said to me on Monday if I have the slightest chance of developing Ms that I'll be on treatment asap and same if I do have Ms. MRI in the next 5 weeks...scary stuff.
Hi Dr. Boster!
I agree 100% starting therapy early and aggressively. MS is aggressive so you
have to be aggressive! I have MS. I have a few lesions on my brain and a couple
on my spine, although it doesn’t sound like much it has turned my wold upside
down FOREVER!!! If only I had started treatment when the Drs. noticed a few light spots on
my brain how different my life might be now. All it takes is one lesion to change
your life. One lesion is too many! Keep up the good work! 👍🏻Thank you for sharing
information with us in the MS community! 😁
Dr B, I was dx in 85. Back then it was basically "good luck" & come see me when you get another relapse. No yearly visits were encouraged because "MS has no cure". I think neuro just didn't want to deal with MS patients at all. When I got another relapse a few years later, Prednisone period. Since I had "mild MS" I was never put on anything, just treated with steriods when relapsed. One neuro said I had strokes not MS so I went without treatment for 4 yrs. 3 of those yrs I was having relapses, untreated. Took me those 3 yrs to get an MRI ordered. Newsflash- active MS lesions. New neuro immediately started on gilenya at 60 yrs old. Neuros listen to your patient!! Your video is spot on, I lived through it.
Hello how are you doing with gileyna
88 freaking months ago, I went from having MS for 18 years, in a wheelchair, attack after attack, the last 8 years getting uncountable lesions. To doing Lemtrada and have had zero new damage in my brain or spinal chord. Over 7 years Gave me a chance at o find a way to work my butt off using the MS Gym and improving every single symptom and getting to walking unassisted within 3 years. The cancer definition for remission is five years of no disease progression and having no treatment. Holy freaking crap who would’ve ever imagined I could be in remission forever two years. After failing on four other treatments, De Barry Vaught just threw his hands up and said he did not know of anything else he could do to help me but he thought he knew who could. I would have to reuse 5 hours but I can assure you it was the best decision I’ve ever made with my health and almost life. His best friend, Dr. AaronBoster. And within four months, I did lemtrada and every single MRI has been perfect. Thank you Dr. AaronBoster for going with your gut and your education and knowledge And believing that you knew how to put us stop to the stuff. And believing in me that I would not always have to be in a wheelchair independent of anything for anybody else.I hope everybody is doing wonderful and I can’t wait to see you soon Boster!
Oh yeah, it’s WV Scotty. You would have known that by the name and The MS Gym reference!!!
I TOTALLY AGREE W YOU DR! I'M a 46yo bw w ms since age 22. I believe that starting to apply the MOST EFFECTIVE MS medicine EARLY would curtail SIGNIFICANT disease progression. Thanks DR BOSTER!
My 39yo daughter was diagnosed in May with MS. So many problems, optic neuritis made her seek help. Thank God for a good Ophthalmologist who sent her to the University Hospital. She has so many problems that she just associated with getting older and gaining weight. No we know it all MS related. He Neurologists is starting her on Ocrevus infusions next week.
Yes yes and yes! Why not bring the biggest and best at the forefront. My neurologist discouraged as well till I found a new one. If we can alter the immune system and save a person from a lifetime battle. The better question is why NOT?
I STAND IN FULL AGREEMENT WITH YOU!
It doesn’t make sense to wait
Keep sharing with all who will listen...one day, hopefully soon...they will see it too
Dr. Boster, Your video should be evangelized to the entire world through the MS society, MS Views and News, etc..., directly to the insurance companies, to every MD and to every MS clinician. You are a visionary and absolutely right. I will be sending this link to my own neurologist and everyone who watches your channel should too.
I'm also of the opinion that MS lesions and symptoms start much earlier than thought. But we may recover quickly or don't do MRIs when we should. I imagine MRIs being part of a routine physical for an 8 to 10 year old in the future if the cost ever goes down. I was diagnosed at 22,but my mom told me of a story when I was 4 or 5 one morning I told her I could not walk. I couldn't get up, and she took me to a doctor's office when I magically started walking. When I was a senior in HS after a very long Saturday when we hosted a band tournament, I got home after about 12 hors of nonstop running around and got a high fever accompanied by serious violent chills, also trouble walking. . I thought I got food poisoning, but by morning my fever was gone, along with the chills and walking difficulty, and I felt ok. I had another one of these episodes a few years later about a year before I was diagnosed, even sending me to the naval hospital, but again it resolved itself in a couple of hours. I still have these episodes maybe once every four months or so, but if I feel it coming on,I take some ibuprofen and it lessens the severity. I'm sure they are related to the MS.
I discovered, after taking control of my own treatment and finding an entire new panel of doctors, my MS had been identified years prior to getting to a neurologist and receiving treatment. My physicians chose not to tell me - instead they let me become nearly immobilized and in uncontrolled pain (they gave me physical therapy). That is not only irresponsible but cruel and may have caused me sow much more harm. By switching doctors, I received steroid treatment and started DMT within about a week and I was able to walk again and return to work. My physicians were not elderly; just sure they knew better. I wish now I had been a better advocate for myself and definitely encourage everyone to find another doctor if the one you see is not helping!
💙
Great information and even better treatment model. This has been thinking back and wondering if I "wasted" four years, if things could have been fought harder. If I had asked better questions. But alas, I can't live in the past. Your channel is providing me with so much information, and equipping me with questions to ask you and Dr. Bite at my visits to clinic.
Thank you. I feel confident in my care, and the path that we are on to manage my MS.
I think you are right. Think of all the damage that is done to a MS person as one drug therapy after another fails. I was diagnosed in 2001. I was started on Avonex, then Copaxone, then Tysabri. Sadly, for me, all 3 failed to slow my MS progression. By this time I was getting burnt out on MS drug therapies & I also had financial issues, trying to pay for Tysabri...so I just stopped my MS drug therapy. This was a bad decision. I was going to a neurologist that was very much old school & he was ok that I stopped treatment. I went back to a neurologist whom I used to see (but she no longer came to my hometown clinic). So I need to drive 30 miles to see her. I was so glad to reconnect with her. She shared information with me about Lemtrada & Tysabri. I am now 1 year post Round 2 of Lemtrada and my last 2 MRIs both showed no new or active lesions. How I wish Lemtrada would have been available in 2001.
I agree with you, Dr. B.! You stated the reasons, and they make sense. How does one implement this change in thinking and approach with neurologists?
Wow! Dr. Boster, if only my Mom had a treatment plan like this in the late 60’s. Now fast forward and here I am benefiting from the latest medication (and loving it) after trying two other meds that didn’t work out. I look back on my symptom history and the 1st time I had numbness appear in two different parts on my body; MS was the first thought that raced through my mind. I was 33 years-old and didn’t know much about MS, other than you’ll lose sensation and control of your body. The doctor who I casually consulted with recommended a visit with a neurologist and told me, “you have a small risk of contracting it even though your Mom had it.” The numbness disappeared after some days so I never went for a consultation. I never set a baseline for myself but I have and will continue to monitor my kids. This insidious disease almost ruined my life and I wouldn’t wish it upon anyone. Keep pushing forward Dr. Boster. I love your direction to move the dial with early treatment & I will share this video to all affected or know someone who deals with MS. 😉
Thank you for this! My neurologist started me on a very aggressive therapy for my MS and I have noticed that I am doing a LOT better physically than a lot of my MS friends who have started with low therapy.
I, 100%, agree with your point in providing the most aggressive treatment to MS patients, at any and all stages of this disease. I wish more MS physicians had the forward-thinking on how to approach MS treatment. To add, insurance companies are difficult to get on board, by requiring the patient/physician to prove the less aggressive treatment isn't working by showing the additional damage/lesions... And, by the time the more aggressive treatment is approved, the damage is already done. I am only speaking from my experience.
When I was diagnosed in 2002, I was told, “you have MS” and here, take this medicine. I didn’t feel like I was given the information to keep this disease in check. I felt is was more of a reactive treatment plan versus a proactive plan, like what you discussed. Today, my DMT has kept me in check, but I still have the “reminders”.
Thanks for all that you do, Dr. B!
YES! Absolutely...because I wouldn't want anyone to go through what I have gone through for the past 32yrs..
This is such an informative video. I was 50 when I was diagnosed with MS. My neurologist gave me 3 options of safe medications. I chose Avonex. 1 1/2 years on treatment I had my first relapse. Only after my insurance said no more payments for that medication did I tell my doctor I wasn’t wanting just safe but effective. He passed me to another neuro in the practice who really listened to me. I’ve recently started an oral med and hopefully I won’t have another relapse.
Yes! You are an innovator and an amazing doctor. You truly care about fighting this disease. Thank you for all that you do! 😃🙏🤗
Yes!! I’m recently diagnosed, low EDSS, and just had HSCT about a month ago! My neurologist didn’t recommend it but agreed to continue to see me as a patient.
I am so thankful the MS community has you. You’ve helped me so much - ms education and therapy ideas I’ve taken to my neurologist.
Yes yes yes!!! My symptoms started late May last year (2018), had a bumpy road from then until September when I got my official MS badge. Started Tysabri right out of the gate in October. I am so thankful for the progressive thinking of my Neuro. And you!! Thanks for all that you do Doc!!
Thank you for this, Dr. Boster! Before I switched to an MS Specialist, my neurologist who diagnosed me operated under a 'wait and see' method. He put me on Copaxone despite me having a very aggressive form of MS and I reacted badly and relapsed. I wish all neurologists thought like you do, it'd save a lot of people a lot of grief.
I agree with you 100%. You were describing my MS journey, lesions on the brain, stem and cord. My Neurologist started me on Rebif. I was diagnosed Feb 2010 and by Oct 2010 I was apply for SSDI. I went from working a 40+ hour a week job to barely being able to stand behind my hairstyling chair. I think if my Dr started me on something more aggressive, I would have a bit more function than I do today.
Thank you for the videos you post, they are fun and informative. Something I wish I had 9 years ago, so I didn't feel so lost on my MS journey.
Thanks Dr Boster!
I wish I heard your lecture when I was first diagnosed :( it's very useful
DR. A,
YES , YOU ARE Right About How to treat your patients with DMT's. Thank you very much for treating tomorrow, today. We have get people's minds out of the STONE AGESs so everyone has a fighting chance with this Dieaae.
I am on a watch and wait. My neurologist said after seeing me for almost 2 years, admitted during my last appointment last month that all my symptoms point to MS. But my last scans two years ago came back clean, he said he can't be certain. It's frustrating, in 2 years I went from walking with a small limp and weakness on my left side to having to walk with a cane. :(
I'm there with you 💔💔
Yes, so that all of the MS patients will be treated and not just hope that we can lean on. It's healing! We MS patients need a cure nowadays. Please help us. Thank you Sir Aaron Boster☝😊
I'm so thankful my family member's neurologist was agreeable to start aggressive therapy right away, and I'm thankful for your expertise and passion.
I absolutely agree with you. I want my family member to have the best quality of life she can with MS.
This is all new to me. But I would tend to agree with you. I want treatment as soon as its noticed. Having MS... gives me the right to draw the _______ Line where I want. And I'm behind you. 100%
You present a very logical argument. I wonder if the insurance and PHARMA cos. will agree. God help anyone who doesn't have good insurance like I do because the cost is intimidting.
I agree that taking the time to properly educate patients on risks/benefits is so important. It makes all the difference to be informed on all sides of the issue. Thank you for sharing!😊
Dr Boster,
Yes I agree to treat MS symptoms as soon as possible and aggressively as possible. I was that 21 year old you talked about. Except I was 18 in 1991 in rural Canada. I had a terrible episode of optic neuritis and was only put on steroids. Doing well now, some peripheral vision loss, but imagine what could have been done to my disease if treated aggressively back then. No regrets but going forward treat aggressively!! Thank you!
Every person is unique in their view of life and tolerance for risk...this should be the patient's decision with input from at least two neuro's...I am 110% in favor of aggressive treatment as early as is able. I'm very thankful for your video's and you are doing a huge benefit for the MS community. Unfortunately, typically a patient gets one opinion from their doctor...that is why this channel is so impactful for me...I'm on my third neurologist in 10 years and I've learned more from this channel than all other forms of media and doctors opinions over that time.
Well presented 👍 Thank you. I 100% agree with presenting patients with appropriate risk/benefit data!
Give them a night or two (or more but don't delay) to further investigate/digest info before committing to new treatment. It can be overwhelming when in midst
Keep this knowledge coming Dr. B
I'm going for my first tysabri infusion today!!!
I've already been kicking Ms ass and I plan on kicking more of it
Thanks Dr. Boster! I wish there was a ❤️ button instead of only the thumbs up button. This was awesome and I completely agree with you. My MS is aggressive and I would have loved the opportunity to start with Lemtrada or even a Stem Cell treatment (only available as a trial in Canada, and only in Ontario...2500 miles from my home) instead of the Copaxone I was started on.
Very informative Doc. Thanks so much for always doing what you do here. Thumb's up~John
Hi Dr. B, I totally agree that there should be a conversation about MS, goals of treatment, highly effective medicines including their risks no matter how “benign” the MS first seems (when I was first diagnosed, I received pamphlets on three med options and told to pick one; and given a website to learn about MS). The medical system is broken. I work in it, and see it every day. Doctors have to see too many patients, there is never enough time, insurance companies dictate treatment, there can be poor communication. I often feel like another number when receiving health care. I am educated and know I have to be my own advocate, but if I didn’t have that knowledge, I would feel even more lost being a patient!
You are an amazing exception to this and I hope your energy inspires other physicians to demand change!!!!
Starting with the most effective therapy sans the risk benefit situation with appropriate caution and getting rid of the escalation model is the right thing to do.
Be 🙏 well Doctor, you are absolutely spot on👍
I completely agree if I would have been given that kind of information and those kind of options I may could still be working now. Thanks Dr.B
I love your dedication!! Thank you for sharing your input and I agree. I am currently on Aubagio (6 months now) but if something happens I do want to start Ocrevus. It got approved in my country 2 months ago. Hopefully I will be stable but in case I will want to go in in, go strong! I just want to thank you again for taking your time and sharing all the amazing information!. As a recently diagnosed person, you have helped me tremendously ! I am curious do you think remyelinization can happen soon- I mean 10-15 years? I understood quite a few studies are taking at the moment for this. Ahh..one can only hope!!
Good morning Dr. Boster! I was diagnosed with RRMS in 2004 & started Copaxone immediately. Though I've had to change meds several times NEVER stopped using a therapy drug due to fear of losing my ability to care for my daughter who was 4 when diagnosed. Fast forward 15 years and & I'm way more disabled now & she's basically taking care of me many days! I'm not even able to work part-time anymore & super grateful for SS disability! I'm sure I would probably have to be stuck in an apartment if not living with my mom in assisted living! I can only imagine where I'd be if NOTHING was prescribed in the beginning!
Dr. B.
I was first dx by an Orthopedic surgeon who had me have an MRI to see if problem was in my neck, but noticed how I was walking and had family history of ms.( my mother has ms) also had me do a brain mri as well. His suspicions were correct. There were lesions on my spine and brain. I saw a neurologist and he felt the same way. Hit it hard and fast. I started Ocrevus soon after all my tests were completed. I go for my first full dose next week, then mri to make sure it’s effective. I’m glad he was in agreement to move swiftly and with the notion to hit it with the best dmt for me. If only more dr’s felt this way, we as patients would be far better off. Take care. Carla- from SC
(commenting from Washington DC) When I was diagnosed with MS two and a half years ago, my neuro put me on Extavia because "it has the fewest side effects" and after I was on it for more than half a year, I did some research and discovered that it doesn't have many side effects because it doesn't have many EFFECTS. So I did more research and asked to be put on rituximab. His response, after discussing the pros and cons, was, "We can do that. Wow, you'll be the first of my MS patients to be on that drug." Then I asked him if I should stay on Extavia as well as rituxan because they address different aspects of the disease process and he said that insurance would not support that. Grrrrr...
Great video, Dr. B! I was diagnosed in 93, and literally weeks later Betaseron was FDA approved. However, there was a lottery system to get on it, and since I had recovered it really wasn't stressed upon me to do anything. I was diagnosed in the military and they called it "probable MS", a laughable term looking back now. Seven years later I went on Avonex followed by Betaseron. Now 26 years later, I am still taking Betaseron, but my disability has progressed much more impacting my gait and I can't stand or walk for more than 25-50 yards. After seeing your vids I hope to get on a top shelf medication, depending on what the VA will cover.
Hi Dr Boster,
I really like your content and I am a big fan of the channel. I would like to share my own story and why I think that you are right about starting with the stronger medication.
My MS was diagnosed around 16 years ago. I had an optical neuritis as the first symptom and that went away and I continued with Tysabri for a long time. This was not the right medication for me.
I moved then to UK about seven years after the diagnosis. They started my on Tysabri here and it was really effective. I then did a mistake and moved to Ireland for a year and my MS did not react well to this.
After I came back it took a while to get my medication started again (8 months, because of PML risk). But I am receiving my second infusion of Ocrevus tomorrow.
I am moving around with a wheelchair at the moment, but really wish that the neuroligsts would take a faster attitude with treatments because it could prevent a lot of these disabilities that you get with the condition. I do realise that these highly effective therapies are a bit too new for myself, but I am happy that I have gotten the therapies that I have at the moment.
I wanted to share my experience on why starting with a strong medicine might be great to prevent ending up in a wheelchair.
I fully agree with your approach and the idea of aggressive treatment early on.
Challenge the status quo. Gotta respect that. Thank you Dr. We need more of that. 👍🏼👍🏼👍🏼👍🏼
Wow....I am actually 1st. Hello Dr. B.!!! Good Morning.....
Totally agree. I was first diagnosed at 49 years old and I was put on Aubagio. My symptoms got worse so the next year I was put on hold for Lemtrada, while being on Tysabri and in many ways my symptoms improved.
Just a year after Tysabri I was given a green light to start Lemtrada. In a few months I'll start the second round. Needless to say that I was very very happy to see that six months after the first round my MRI showed no activity. Now I am focusing on recovering from those symptoms that left sequels. However, it feels as if I've come a long way in just 3 years...🤔
I was diagnosed September 2018, doing reasonably well after two doses Ocrevus. Your perspective is reassuring as I switch from Ocrevus “up” to Lemtrada.....the decision based largely upon info gained from your vids and the Barts MS blog. I’m nervous about Lemtrada but more nervous about looking back in 20 years with regret over not hitting as hard as possible. Wish me luck! :)
Thank you so much for your amazing videos ❤️
I could not agree more! It all comes down to education and I have to say in 2001 when I was official dx my well regarded neuro did not do a good job of it. Too much wait and see and no education on how my ms was silently progressing as I was fully functional at the time. The result was no meds for 8 years and even then just copaxone for several years which proved ineffective. Today after tysabri and lemtrada I am severely disabled and have low quality of life. When I was dx I was running 3 miles every day now I can barely walk from bed to bathroom. I wish I had 5 minutes to tell every newly diagnosed ms patient to be as very aggressive as they can be from day one. Patients and neurologists need to come together upon diagnosis as their own army and fight but when patients don’t see their neuro being aggressive they feel it’s ok if they are not either but the neuros don’t have to live in their patients’ ms body in 20 years. My ms was not positioned to me as serious as it is and not having symptoms was clearly positioned as a victory...a sign I was wining when I wasn’t! I just didn’t know it, I don’t think patients understand that at all. I say to the wait and see-ers that as bad as they think they feel today they are going to wish they feel that good in a year. It sucks being so disabled. But it sucks more to know I could have done more and I didn’t.
Well said,Dr B!
I guess I'm lucky enough to be in the care of one of your colleagues who are in the minority...After 46 years of no symptoms, I was hit with Transverse Myelitis in March. My original neuro admitted that my case was one of the most challenging of his career, and referred me to a comprehensive MS center here in Jersey. The neuro there explained to me that because of my age,ethnicity and gender at the time of onset, that I needed to break out the big guns to keep this thing at bay.
After discovering your videos,I realized that I was good hands.👍🏾
Keep doing your thing,Doc!😸
Dr B. Oh,The trouble I would have been spared if my first stop had been OHIO HEALTH and not my last. It makes me want to cry. I have been doing so much better with the “swat team” method of treatment. Thank you for your teams forward thinking approach. It literally saved my sanity.
Thankyou dr. Boster for all the education and what u think and passing on your opinion. A great way to learn. So I can talk to my dr. about M.S. Thankyou
Yes!!!! Start early and strong!
YES YES YES I totally agree. God I hate this damn disease.
Dr Boster, thank you for this wonderful channel, means so much, wish there were more docs out there like you.
Absolutely agree Dr Boster - it seems obvious - why wouldn’t you want to use the most efficacious treatment options???!!! Entirely thanks to your educational, informative and empowering videos I have been able to convince my neurologist (escalation treatment philosophy) to put me on a top shelf DMT. Thank you so very much ❣️
I feel that most Doctors don’t do a good job of exposing the what if’s when giving options of a DMT. They just say a couple and then ask you what you want. This leads to Dr. Google and that leads to patients (like me) that are scared to death of the side effects. I wish I found this channel and visited you a lot sooner. I didn’t fully understand the reality that just one more attack could leave you worse off then we can imagine. I feel insurance should approve the higher tier therapies for first line. I truly wish I would have started up top. Thanks for the video and all your doing. #kickms
I agree. As long as the risks are spelled out and I understand what they are I am for the most aggressive treatment that is available for me. Doug coffee in hand.
Hi, you are absolutely right, i need a doctor like you, very, very good, multiple sclerosis is several disease, many crazy, i don, t understead, thanks for those video my dear dr Boster
Well that was enlightening. My daughter was diagnosed 8 months ago and nothings being done. No meds, no PT, no follow up of any kind.
I love you and agree wholeheartedly. I finally met an awesome neurologist that actually listens and have discussed all the benefits and side effects. I'm in hospital at the moment with spms and two of us have done loads of tests tu over the biggest side effect that siponimod has. The first thing that she did was an ECG. So at least I have hopefully the go ahead for siponimod. She also taught me something I never knew. Baclofen was my evening drug for muscle relaxation. She informed me it's antispasmodic. So no more wheelchair!! Only going home with walker and the PT is awesome. Small things but within 4 days my independence is returning! I'm exactict and I told her to start following you on CZcams to stay up to date. I've had MS since 1997 and there were no treatments in South Africa at the time.
I really appreciate how candid you are in your discussion on this topic. It’s hard to put into context what it means that your MRI says “highly suggestive of” and “worrisome for” and “not inconsistent with” MS. It’s like.. what does that mean??? WMH are diffuse and bilateral and I don’t understand how this can be considered asymptomatic. I have to trust the doctor though because I just don’t know. And it’s hard not to feel like information is withheld, even if it’s somehow for my own good. I just try not to think about it but most definitely, things feel changed.
This is so true! I was having severe symptoms 10 years ago. I had a MRI and had 2 lesions on my brain and 1 on my cervical spine. The neurologist decided to to do anything. I was officially diagnosed in Feb 2018. My current neuro said if I had started therapy,things wouldn’t have been this bad😔.
I totally see what you are saying. I guess the counter argument is that you would inevitably end up overtreating a small number of people. As potentially one of those, I'm very glad I wasn't nudged towards Alemtuzumab at diagnosis, 17 years ago.
I was diagnosed in 2002, with optic neuritis and a couple of other symptoms, which certainly didn't look benign at the time. I was lucky enough to be put straight on to injectable therapy, which I have stuck with ever since (apart from a couple of breaks to have a family). My disease course has turned out comparatively very mild - I only occasionally have minor sensory relapses and MS has very little effect on my day to day life. To what extent this is down to prompt treatment we'll never know, of course.
Aggressive early treatment would certainly help many people, but I'm selfishly glad to have escaped it.
I LOVE the idea of being able to choose a high efficacy treatment out of the gate - of course with an honest discussion of the risks and benefits. Being diagnosed late and treated with lower efficacy drugs first I have come to appreciate the benefits of attacking it hard early. It comes down to "if I had known then what I know now...." If my daughter got the disease I would definitely push for the higher efficacy treatment model.
Agree 💯. My mom was dx with “syringo myelia “ in 1990. I have felt very sure she has MS for a few years.
I sincerely hope more and more neurologists follow your example. While a list of side effects may sound scary, an undertreated MS is much scarier. My first neuro wouldn’t give me anything stronger than Rebif even though I was relapsing every other month and it was causing a severe depression. Told I’d be bedridden very soon. It took way to long to get the referral and I only got it by sending my Dad out to move the car and me then starting a commotion about it. I’m of the opinion that starting with injectables is a bad idea with the much better treatment options out there today!!! 🤗❤️❤️❤️
Totally agree. I started with Betaferon, moved to tecfidera, tysabri and now Ocrevus. I’m finally on a Med that is making a difference
I think it makes complete sense. My story may not help support your idea but it aligns. The onset of my MS was severe, over the span of a few days, I went blind, severe vertigo and tremors, severe pain, really bad cognitively, couldnt swallow. And, they did not give me steroids until 2 months after it started, my brain MRIs were clear but my mother has MS so we knew what it was. 3 months after onset, a softball sized lesion appeared on my brainstem. My doctors, most MS patients, myself included, it sounds crazy to say I have Relapsing remitting. My symptoms improved, I'm no longer bed ridden, but they only improved half way and they come and go throughout the day at different levels of intensity. I was a sane, very active, very productive person, until it all changed practically overnight and I do believe my symptoms did not improve as much because I did not receive medication fast enough. 2 months until steroids, 3 months until MS medication. Thank you for your videos, you seem like you really care about your people, it's a breathe of fresh air.
Thanks Dr B! The first drug I was given after my diagnosis was Tysabri, that was in 2010. I had an allergic reaction but I feel like my doctor was trying to accomplish what you're describing. I was in bad shape at the time, if that changes the situation.
Your not crazy. Keep going, de need so many of you