Dang. Look at all the people commenting here who are afraid to discuss their health with their doctors. Or, if they're not afraid, they know their doctor will ignore them. That's a crying shame. Thanks for doing these videos, Dr. Boster.
Thanks for the update…I am a long termer (30 years), I have mobility issues that I work on daily with MSinglink and MSgym, Ocrevus did not work for me as I didn’t react well (flared many older symptoms), so now I am on Aubagio to hopefully keep inflammation down. I am waiting for remyelination efforts and smoldering ms efforts to come to fruition. I feel lucky because aside from the beast, I am pretty healthy and strong so I think many people are facing far greater challenges. I appreciate all the updated information you share, it truly is helpful!👍
Dr Boster thank you for this video!! I actually cried at your clear open discussion on issues affecting us with MS You answered many questions I've had in my head my neurologist refuses to discuss to keep me on a drug that's no longer working for me. You've given me confidence to stand up for myself! Thank you for your kind, experienced and compassionate video.❤
I read these comments and realise how lucky i am to be in Australia and have a kick arse neurologist who gives me the control to manage my treatment, not the other way
Dr Boster, Hope you are well and thanks for making great videos. Right now a lot of us are really bummed out by the total wash out of the ATA-188 study. Could you do a video about that study, what it hoped to achieve, how, what went wrong and other exciting trials on the horizon in the same area? It's a big ask I know. Cheers and best!!
Hi Dr Boster, I've been on occrevous since late 2019. I've tolerated the drug well and no new activity. However, the last few years I've been getting UTI's often. The last one was 2 months ago and was called a super UTI and needed 3 different antibiotics. I now have another and saw another neurologist on RU-vid say how occrevous can lead to increased infections. I am going to get in touch with my neurologist and tell him my concerns but am a little afraid of his reaction to my thoughts. I respect your opinion on the subject and wonder if I can get your thoughts on this. Thank you for all the wonderful data you put out. It's because of your explanations that I understand and can explain MS and how the occrevous works. Love your channel and keep up the way in which you help us regular folks understand this complicated disease.
Thankfully, I have a really good neurologist now. Took about 5, but I just started Aubagio. Will be seen again in January to check how I’m doing and go up. So far my side effects have been mild, and although I was flaring up from over exerting myself, my fatigue has already been letting up.
Thank you so much for your videos. They really are so impactful. My Consultant is suggesting Lemtrada round 3. My MRIs are showing stability, but 5 years on after the 2nd year course of Lemtrada, I started feeling unwell with flared MS symptoms which soon settled. She's saying I had a clinical relapse (I'm not sure I agree). I questioned whether I should forgo the treatment until I really need it and was advised that having it sooner can protect me in the long term against background clinical progression. Please let me know what you think or would advise?
Thank you, Dr. Boster! Q: I was on Tysabri for at least 3 years before I had to get switched to my current treatment (Tecfidera). Is there a way to possibly get get back on Tysabri? Of course depending on blood and JC virus results?
Hello Mister, i uploaded a Video of my Brain after a few days ago a Doctor saw a MRT from 2017, the scan of the video there is from 2023. I would be very happy if you would take a look. I have bright spots in the front of my brain and a year ago I noticeably lost mental capabiltys. It is also noticeable that I don't have any bright spots in the center near the beams wich i saw on many MS scans. In Germany you have to wait half a year until the next appointment, then I have the next scan where they look for MS, so I would be happy.
I was diagnosed with rrms 3 years ago and have been on ocrevus for the last 2.5. Only one new lesion but a lot of increased disability. I've gone from using a cane to relying on a wheelchair. At the time of the diagnosis I had a very large number of lesions. My neurologist seems to insist that rrms is the best diagnosis but I don't know? Any insight from you? Obviously I haven't given anywhere near enough for actual diagnosis but I am interested in what you may have to say
I was also diagnosed with RRMS - 9 years ago this October and started Ocrevus 3 years ago. I am the same - no new lesions but also increased disability (have lots of older lesions in brain and spinal cord). I use a cane and have been doing exercises to try and keep myself out of a wheelchair but it’s becoming harder to walk and keep my balance. I feel I have transitioned over to SPMS even though I’m still considered RRMS. MS is such a pain in the you-know-where.
Hi - just as a person who has the same issues… I don’t think these drugs really work with PPMS (which is probably more the diagnosis). It’s the best we have - but saving our walking abilities is really hard. I’m sorry you are going through this too. We need better drugs.
I was diagnosed in 2007 with rrms after two c-spine lesions. One which caused me to lose most of the feeling on my left side and both legs. The feeling came back but with a vengeance. Been living that way since. In all the time since I’ve only had 3 more lesions. Maybe you need to change therapies. Also you may well have rrms(we are all different) but a second opinion couldn’t hurt.
I have had ms for 20yrs. I am experiencing my first troubles with walking, which has progressively gotten worse over the last two years. I have never taken drugs but am considering ocrevus. I may be in spms now, but they say ocrevus is approved for ppms and rrms.
Hi Dr. Boster! Another great video, thank you! Quick question (ha!)... How can we tell on 3T T-2 FLAIR MRI image if the lesion shrinkage is Nerve Fiber Degeneration (ugh!) vs. Remyelination (Yeah! Go Clemastine!)? Lesion shrinkage in CC is obvious, but how does it present on the Thoracic Cord? A lesion previously 22 mm in length, now 15 mm in length WITHOUT a "Black Hole".
Have you heard anything about AB821? They called me about being in their clinical trials n I have quickly progressing secondary MS my Dr put me on abagio, n I'm just progressing anyways. My functional reserves are at the bottom of the pool Karen IN Indiana
Question I was told you can't see patients outside of Ohio by your staff, is that correct? I'm in Indiana have Medicaid. Staff told me you had to stop seeing patients you were already your treating.
I’ve been put on Ocrevus every 6 months and luckily I have had no problems with the medication however, why is it that the few weeks before I am due for my next infusion I feel crummier. For instance, my next scheduled infusion is on December 23rd and I have swollen throbbing feet all the time, it is so frustrating.
I believe that’s what they call the “crap gap.” It’s because as you get close to your next infusion, you have the smallest amount of medicine still in your system from the last.
Hi doctor, I'm 34 and recently diagnosed with primary progressive ms. Doc has given me nervilin once at night. But it's not very effective. Can you plz guide me what to do..
I have 8 lesions and 3 are Tumefactive ( only brain)Female now 50, Dx Jan 2020. 1st treatment Ocrevous two rounds, then switched Mavenclad (completed both years by 2023) because of Covid and Dr also doesn’t like constantly suppressing immune system. Do you recommend another treatment I should be taking for maintenance or wait it out and see what happens. I had zero symptoms besides progressive positional-dépendant headache and now left side numbness/weakness and guessing this is permanent.
Do you have an opinion on rituximab? The Dr I talked to said he saw no difference in outcome with ocrevus. It's a fraction of the cost because it's generic. He thinks ocrevus was developed because physicians saw the effectiveness of rituximab so they developed a new anti-B-cell antibody, because it would be patented.
The terminology is "highly effective". But I think more accurately, they're moderately effective, and the other treatments such as interferon are quite weakly effective.
I have Primary Progressive MS, here in the UK you get the diagnosis and other than pills for pain, muscle cramps and anti depressants we are left alone. Nothing is given to slow the progress, or at least that is my experience. I have now developed epilepsy as well so new pills for that. Is there anything at all that I can ask for that can slow the progression for someone who has had a PPMS diagnosis for over 15 yrs?
Hey Dr. B An interesting idea for a video. Why don’t you at some point in time team up with Secondary Progressive MSer. Dulcimer Hill. Perhaps you may be able to get a great perspective on Dr patient points of view, Dulcimer does live videos about once a week with I beleave 30,000 subscribers. She also does outreach hooking msers up with each other. Been on RU-vid for about a decade. All videos are to help those learn how to manage life with various degrees of MS Not right away but I think it is worth considering. Peace, Tom Winsted ct Junction of 8 and 44😮😊😊 30, 000 probably not correct, but over 3,000 subscribers Real grassroots advocate.
Dr pls I was diagnosed with Ms this year my symptoms is very wired I’m having this bad heaviness in my brain and feel pressure in my brain .. my doctor only gave me steroids (prednisone) which isn’t working for me .. can you please help me
Some people dont tolerate the contrast. Just tell them to not use it next time. I have heard about people who got terrible headaches for few weeks or peeing themselves after getting it. They cannot force you to do it again.
