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

[@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.

[@tamarawestberry8838]

@4inrev keep searching. I have helped people get out of the chair, kept myself out.

[@theMSguide]

I am very fortunate to be on the research side of two uk based trials using AI. I think it will be a revolutionary force.

[@EvenSoItIsWell]

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

[@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!

[@lemonpeelangelfish]

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

[@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.

[@tamarawestberry8838]

@hilarykerr7383 good. There is Low Dose Naltrexone that helps control inflammation, MS foods do and don't eat, Peptides that can heal from the inside. Gut health. Search for Functional and Naturalist methods first. You are your best health advocate. ✨️

[@tamarawestberry8838]

@hilarykerr7383 if you're stable. Celebrate! Focus on healing your MS. I have. I'm kicking MS in the Teeth. Diet, Low Dose Naltrexone, reducing inflammation, medication reducing stress, the foods I eat, Peptides that heal. I've had lesions disappear. It doesn't happen right away. Research, you're the best advocate for your health. Exercise as well as possible.

[@hilarykerr7383]

@@tamarawestberry8838 Thank you for your suggestions. I definitely believe diet is the best way. I'm due to see the consultant in September, let's hope all is well.

[@theMSguide]

@hilarykerr7383 diet, as Prof Jelinek from OMS says, is part of treating MS along with an effective DMT. There is no decent evidence for LDN. It won’t harm you and if you can afford it the positive mental effect of doing something is not to be sniffed at. It just doesn’t actually do anything measurable.

[@tamarawestberry8838]

@@theMSguide you're uninformed. I'm living proof out of 100,000s of thousands it works. Please don't reply to my comment. It's your opinion. Thank you. Be Blessed.

[@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?

[@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. 🙏

[@tamarawestberry8838]

@1999zrx1100 I wouldn't start another DMD. Get a second opinion. Focus on external changes you can control. Reduce inflammation, diet, stress, essential oils, Peptides that heal at a cellular level, exercise as you're able. Stay positive.

[@theMSguide]

Are you in the UK?

[@arvita3147]

Thanks!

[@theMSguide]

Thank you.

[@sunnyrey9304]

Does anyone have experience with pretty much all the symptoms but nothing showing up on an MRI? If so, did you ever get a diagnosis?

[@theMSguide]

There are plenty of MS mimics. The oligoclonal bands from a lumbar puncture would seal the deal.

[@sunnyrey9304]

Thank you

[@theMSguide]

@sunnyrey9304 pleasure. I’d read the MS-Selfie by Prof G this week. I did after I replied.

[@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

[@__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!

[@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.

[@maryclancy1618]

Hello my daughter has just been diagnosed she is 25 , can I ask if you are on treatment , many thanks and I hope you keep well😊

[@theMSguide]

@maryclancy1618 I am on Lemtrada - well it is an IRT so am all done now - and have had MS 33y. A lot has changed. Thinking 10-29-30+ y into the future fr your daughter she is going to have the best results through an initiation and not escalation approach. This isn’t opinion but supported by data. If I could turn the climate back I’d have had HSCT or Lemtrada from the outset. It is a bit the future outcomes, not the now. V had to conceptualise as humans don’t do well with future planning!

[@theMSguide]

@maryclancy1618 I have had 5 treatments in total. Always tried to stay ahead of the curve.

[@__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.

[@esteladavoodi6609]

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

[@theMSguide]

Glad it was helpful!

[@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

[@gbsmithgbs]

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.

[@theMSguide]

Phase III trial? I’d be all over it. To get to phase III both safety and efficacy have already been shown. You can always look it up on clinicaltrials.gov The most important thing for you is that a long term view is taken and that you start a high-efficacy DMT as soon as possible. This means that long term effects of MS are minimised as much as possible. A Phase III trial won’t be testing a low to medium efficacy drug.

[@osminvalle9445]

Can you help someone who has had MS for 15 years she Has been on copacson and Ochroves and some other medication, she has weak hands , legs and she is in a wheelchair, gets tired very easily. What’s her future? I don’t know 😢

[@theMSguide]

I am not a doctor and i certainly can’t predict the future;( Living a Brain Healthy lifestyle and being on Ocrevus is as much as you can do.

[@TravelingWithSpecialAbilities]

I had EMG. It hurt like hell! I'll never go through that again! Are you saying that there is a test that does the same measurements? That's is painless

[@theMSguide]

Not sure what EMG is but what Bart talks about is totally painless

[@TravelingWithSpecialAbilities]

@theMSguide An electromyography (EMG) test measures the electrical activity of muscles to assess the health of muscles and nerves: How it's performed A medical professional inserts a thin needle electrode into the muscle, and the patient contracts or relaxes the muscle. The electrical activity is displayed on a monitor and can also be heard through an audio amplifier.

[@theMSguide]

@TravelingWithSpecialAbilities thanks

[@TravelingWithSpecialAbilities]

@theMSguide so they in layman's terms shock your muscles into spasming the see how long it takes to register and travel to your brain. And they can turn up the intensity. It is very painful and is a 4 hour test. They read it off a graph that it is saved on their computer.

[@TravelingWithSpecialAbilities]

@theMSguide I am 62 and was first diagnosed incorrectly at age 19. I was told that I had chronic fatigue syndrome. I been years of testing a multitude of doctors, and I am tired of being a guinea pig. I have kidney disease and stones and live in extreme pain. I just want to try to travel the US and enjoy my children. Not live at the Doctors and hospitals anymore.

[@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?

[@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.

[@BernadetteDevlin-l6w]

Dos swollen blood vessels in Brain come to MS.

[@theMSguide]

MS is such a varied disease. Are you asking if swollen blood vessels cause MS or does MS cause brain vessels to swell? Either way, I'm, not a doctor but I can certainly ask for you.

[@BernadetteDevlin-l6w]

@@theMSguide Thankyou so much

[@VIVIENJANEGRAY]

YES. STEM CELLS ARE WHAT I NEEED.! VIVIEN GRAY!

[@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.

[@RoxanneJohnson-u5w]

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.

[@RoxanneJohnson-u5w]

@@theMSguide but could it work???

[@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.

[@Ena-re1em]

Physicians sometimes ignore the "RI" potential (real intelligence) of the patient to report on actual observations

[@theMSguide]

What do to mean by real intelligence? Is it the patients general intellectual capacity or their technical knowledge accrued in their own life?

[@Ena-re1em]

@@theMSguide I am refering to their lived experience of the disease, 24 hours a day.

[@theMSguide]

Yup. They want to express it all empirically. V frustrating.

[@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.

[@JustMe-ew4rr]

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

[@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.

[@dianadenbesten247]

Hello I have some questions if I may. Where have you been? And what edds did you have and how long did you have MS for? Thank you in advance

[@theMSguide]

@dianadenbesten247 where have I been? Not sure I follow you?

[@stephanies1474]

Way too many commercials on this video.

[@theMSguide]

That is something entirely out of my control. KZbin puts they as and where they think. AM very sorry but it is not in my control.

[@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.