PODCAST - Prof Bart - An incredible insight into what you should expect from your MS Neurologist

I found this video very interesting, as 43 years old. Multiple sclerosis fighter in a wheelchair. With 22-year experience with MS. Podcast part where you are talking with Doctor about artificial intelligence it gives me new hopes in the future of MS issues.

Guess I’m not alone thinking my neurologist has too much on his plate and I’m just a patient that doesn’t have severe enough symptoms to warrant special attention. Meanwhile I’m getting worse by the month, they suggested starting on Ocrevus 6 months ago and I agreed to start ASAP but I’m still waiting for the call. I’m 67 and barely still walking but things as you all know sure is hard. Thanks for this video. 🙏

I am surprised not everyone does spinal cord imaging. First one I had of the spine in 2013 was where they found my MS before the brain MRI. I do like the idea analogy of MS not being in the forefront of everyday. Thank you drs for this wonderful insight

Great video, very interesting. My care isn't great l always feel rushed and there was never any real talk of drugs. I did take an injectable form and there was a discussion to change but i refused and now don't take anything. My consultant said if I don't take one that is on offer, i will miss out and that will be it. At my last appointment he dismissed any discussion on this topic and said everything looks stable. I feel like I've missed out and worried about what is going to happen to my ms.

Thanks for the video Dom. I really appreciate what Prof Bart had to say about patient care and the science.

This is just brilliant Dom!! Thank you so much for this awesome interview 😊 hug 😁

Hi, I was diagnosed when I was 23, never had any relapse for 10 years up until this January 2024, glad I found your channel. Great video, I learned a lot, do you have any tips how to communicate the need to Spine MRI to the neurologist? I never had one but last month I experienced this election pain from my spine to my upper back and front its like a wave, but she said it's nothing probably just side effects of prednisone

I thankfully have a neurologist that insisted on brain, cervical, and thoracic MRIs to dx me and at my 1 year check. When you said "infratentorial or spinal cord lesions" for prognosis, I was like, "oh I know I have cervical lesions. What does infratentorial mean? Hm. Let me check my MRI results. Huh I have that too" LOLOL

This is so interesting. I’m British but call Western Australia my home. I was diagnosed here & am on a DMT orally Techfidera. Thanks for sharing 😊

Thanks!

This is mind blowing to me. I am in the US and the closest MS specialist is 6 hours away. I see a neurologist that does see other MS patients but who specializes in brain tumors. The first 5 years after my diagnosis I just trusted the doctor and did what he suggested. I did not even know that I had choices. I read every book on MS I can get my hands on and I search for other resources like this YouTube channel. I have to do the research and make charts and graphs and list sources before the doctor will even listen to me in the 15 minutes I am allowed. I’ve taken notes during this 25 minute video and I will spend hours researching everything mentioned but it might not ever be available here.

Thank you so much for this video! Its an eye opener! Very interesting an hugely informative.

45-60 minutes is incredible. I was booted out after 10 minutes during my diagnosis conversation because the next patient had to be seen... mad. Dutch system isn't great when it comes to this.

This is fantastic - I wish this was the standard practice. Simply having the data and metrics of progression is necessary for making informed decisions for MS DMTs. In NL we are all put on the escalation ladder where two neurologists I spoke to refused to put me on Ocrevus. I now have to wait to get worse before they would even consider it... Bizzare. In NL there are also only 10-20 HSCT treatments a year in TOTAL. And to have this you need to have "extreme circumstances" / have massive MS damage already - completely backwards when it comes to trying to PREVENT the damage... It took me quite some effort to convince my neurologist to also perform a spine scan as in NL they only scan the brain...

Wow, 5 DMTs, that very interesting. I had the same opinion but skipped right to Alemtuzumab after 16 years of carful observation and education. I'm not great with lifestyle modification. Had I started with lesser drugs and built up to Alemtuzumab it would have cost like $20,000 over the years and I don't like to introduce that much psysiological intervention over long periods. Since I was quite young and besides the first extreme episode, my case is relatively mild. Ironically I saved not only $20,000 in medical cost but another $5000 on the two doses of Lemtrada since my health insurance won't cover it since I didn't fail at two other DMTs but I'm just poor enough to receive it for free anyway.

Sigh...the uncertainty worries me the most. Everyone is playing these games and I'm out here battling.

This was very interesting. I was diagnosed 5 years ago after 18 years of multiple diagnoses. There are more than 20 lesions, including some quite large and several in my spine my MS is now SPMS due to never having any medication. Since diagnosis more lesions have appeared several large. I do not qualify for treatment in my country. I would love to lnow where my journey will likely take me.

I’m here to educate myself about MS because my wife had it for more than 20 years with bad flare ups numb in one side of her body after first child and maybe birth control pills the medicine didn’t work cause her more side effects like passing out but we changed things a round with good diet since then no flare ups no medicine except Ms hugs from time to time she used over counter inhalation medicine.you can learn from doctor about the disease and the rest on you

I was diagnosed in 2021 went to the Er because my left leg was losing power at the knee . MRI , Steroids so on . They said they will take care of me , refered me a neurology association. They said have a medicine wat is in clinical trials 3rd phase . I asked , is the medicine FDA approved? Answer was not yet. My next question was. How do they kow that test medicine would work with my MS stage. Of course no straight answer, but the paper i received said it is some European company who is trying to put the medicine on market Asked the neurologist , based on my MRI what stage I'm in of corse no straight answer.

Thank you for your video,really interesting,I learned many things from this video. I'm from UK,and my neurologist thinking I had Ms,but I don't have a proper diagnosis. I just suffering in periodic maybe can I call it "flair up".Very strange symptoms, I had now more than one years continue numbness in my legs and sometimes is so painful I can't walk,my left eyes had diagnosed optic neuritis