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

In this simply fascinating interview into how MS care ought to be done (IMHO) I talk with Prof Bart van Wijmeerch who practices in Belgium. He has a very enlightened view on how to treat patients. I just loved talking to him and hearing how he goes about everything. You are v lucky to be one of his patients.
We also cover the use of Evoked Potentials to aid in predicting the course of our MS and how these form part of the diagnostic and managing process.
Read what the MS Trust says about Evoked Potentials: mstrust.org.uk/a-z/evoked-pot....
This is a paper about EPs - www.ncbi.nlm.nih.gov/pmc/arti... and it concludes: 'These results suggest that evoked potential is a good marker of the severity of nervous damage in multiple sclerosis and may have a predictive value regarding the evolution of disability.'
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After 31y of #MS I have accumulated a wide network of contacts, so I am sure we can work together to answer any questions you have about MS. I look forward to hearing from you.
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[@4inrev]

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.

[@1999zrx1100]

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. 🙏

[@cubbi2789]

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

[@theMSguide]

Glad it was helpful. I am not a Dr! A plain vanilla patient of 31y!

[@hilarykerr7383]

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.

[@arvita3147]

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

[@theMSguide]

I'm not sure what country you are in. Essentially, I have asked them to explain to me why there is this theoretical stopping point. Spinal lesions are a known part of MS. They may be there from the start, they may develop later. They may be getting worse, they may not. There is only one way to tell. MS is progressive in nits nature, it is logical to watch the brain and spine. There is no other way of seeing if there are lesions there of if they are how they may be changing. It is simple logic. If you don't look, you'll never find anything. However, if you do look you may never know what you find.

[@EvenSoItIsWell]

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

[@MrMikk532]

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

[@annjohnson203]

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.

[@theMSguide]

What country are you in?

[@Py16777216]

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.

[@Py16777216]

I probably would have taken a DMT sooner had I really trusted the neurologist I had at the time.

[@lemonpeelangelfish]

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

[@__Wanderer]

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...

[@theMSguide]

I find the no-spine thing anachronistic. Additionally, I feel your pain. It is like you need to suffer irreversible damage to earn the reward of a higher efficacy DMT. Madness. I have a Dutch mate who is on Cladribine so may be worth leaning on the doctor?

[@__Wanderer]

@@theMSguide currently on Vumerity, as soon as I see any change or new spot on my scan I am likely swapping to mavenclad / cladribine as it seems to be the closest option to HSCT we can get :) Thank you for your quality content, great insights!

[@__Wanderer]

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.

[@leaveittolefty]

i hate it when i ask a question and doctor says " i have other patients waiting"😠

[@__Wanderer]

​@@leaveittolefty Agreed :) I think a minimum 30 minute conversation (with a 10 min buffer is needed). I only see my neurologist after a scan... once a year or so.

[@alrightwithms845]

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 😊

[@theMSguide]

I worked as an offsider on a rig in Laverton WA in 1989

[@esteladavoodi6609]

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

[@theMSguide]

Glad it was helpful!

[@300M3R]

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

[@theMSguide]

You’re not alone. So far it is 31y of it for me. Different and the same for us all. Bart is a trustworthy source. An exemplar. V. few practice to the same standard. Sadly.

[@arvita3147]

Thanks!

[@theMSguide]

Thank you.

[@destrygraves]

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 KZbin 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.

[@theMSguide]

Where in the US are you?

[@destrygraves]

@@theMSguide Louisiana.

[@user-kn2mm7ki8z]

I would love to know if ivermectin and hydroxichloroquine. Finding someone that is good is hard! I am in Minnesota, USA. Have had 2 lumbar punctures, known brain lesions for years, weak legs like rubber and you either sit or fall, joints hurt extremely bad, RBD, narcolepsy, loss of vision, can’t really see typing this so excuse the errors, occipital neurologia, etc. Now that it has been 11 years 4 neurologist, can’t work nor have a life they did say I have MS. I had to show the dr the difference in lesions. They never even reviewed the MRI they just looked at the notes. I want to try the ivermectin to rid parasites that we all have before taking Aubagio.

[@theMSguide]

@user-kn2mm7ki8z joint pain and swelling are the main side effects of ivermectin.

[@user-kn2mm7ki8z]

@@theMSguide but could it work???

[@sophiejeet684]

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

[@theMSguide]

Gosh. If I were you I’d think about changing neuro if you aren’t being taken seriously. Hear prev podcast #timeisbrain Where in the UK are you being seen?

[@Durace11Bunny]

Great in depth video, I could listen to this all day. Dom have you thought about setting up a Whatsapp channel ppl can follow? All numbers are private and no one can reply. You simply use it as a kind of update, might help your channel.

[@theMSguide]

I can’t cope with yet another place. What I really really need to get are Patreon supporters so I can afford to pay someone a day or two a week to manage the burgeoning social media admin. I am better at the front end. KZbin keep moving the goalposts further back regarding payment. I won’t see a cent from them for some time to come. They really want Mr Beast style content.

[@deboratribble6250]

I received stem cell therapy, unfortunately it didn't do anything to help me😕 Maybe it was the quality of them.

[@theMSguide]

There are so many factors that influence the outcome of any therapy. Some of the HSCT advocates would have you believe it is nothing short of a cure in every circumstance.

[@Watcherw1]

stem cells might be the answer

[@theMSguide]

To any MS diagnosis at all? I wish they were one of the main offering on diagnosis.

[@Watcherw1]

@@theMSguide Mesenchymal stem cells. There is a clinic called dreambody clinic in mexico. They have the edge because they do intrathecal injections. They are seeing lesions on the brain and spinal cord heal.