Fascinating! AI gets a bad wrap, but there are so many synergies to be gained through this. I’d prefer AI to review my MRIs instead of a Dr which in my experience can be discretionary.
@theMSguide8 сағат бұрын
Spot on. I keep saying (I am part of the trial team) that we will have no problem recruiting for this. Who wouldn’t consent to human plus AI?
@dkasper3267Күн бұрын
Everything must be anxiety with women. This stereotype is why women are misdiagnosed and dismissed.
@Robin-me8fe2 күн бұрын
Very interesting!
@KymberleyBradshaw2 күн бұрын
It really is!
@scores7182 күн бұрын
Btw it hasn't been easy
@scores7182 күн бұрын
Hi from nyc. Ppms 35+ yrs. I am 75+f. What do you do? Nothing can be done. Had few mri( maybe 3 total) never had lp. Use a rollator, still drive. Ted my case in mild to moderate category. But major bladder, walking difficulties. Rarely see neurology, last one said, see you in a year.
@theMSguideКүн бұрын
Some doctors are far more disposed to engaging with older MS patients. I don’t know about the US.
@__Wanderer2 күн бұрын
As a data scientist myself - I think you may need two techniques for each issue 1) lesions 2) atrophy. I think for the lesions a model could be trained on image recognition using a YOLOv5 setup. Lesions are classified and identified. Overlapping the found regions between time series would give you an idea of as to whether new places appear. For brain atrophy I think an image segmentation technique may be useful. Each "slice" of the brain could be segmented into "white matter" and the outer skull. Finding the volume or area of white matter with the image and subtracting that from the area of the skull would give an idea of the area within that space. A cumulative addition of all slices and a normalization step may give you an idea of the % volume. Comparing vertical / horizontal slices would improve the accuracy. Normalization step may be required as I have noticed some images from the scans aren't exported in the same format so we need a relative % measurement. Comparing these in time series may give an idea of volume changes. It has always bugged me as to why this isn't done as standard with MS. All of this has given me some ideas xD I may have to look into it myself and play around with my own scans :) Very interesting topic and video thank you! :D
@theMSguide2 күн бұрын
Have you watched it through? I’d direct all comments like this to icometrix regarding the icobrainMS tool that is being installed see. Icometrix.com Those is their already developed product that we are testing.
@__Wanderer2 күн бұрын
@@theMSguide I have now! Great conversation and very interesting research they are doing, thanks again :)
@grafter20023 күн бұрын
For me WAY B4 an uncomfortable lumbar puncture & a neurology diagnosis; my best friend's mother a nurse at the time delivered those very words "IT COULD BE MS!" as did my 1st Neurologist & I was devastated as I'd heard nothing good about such a diagnosis. As the late Richard Pryor called it MORE 💩 that's EXACTLY what it is. So after returning to complete my degree carrying my 2nd son I did what I ALWAYS dreamed of doing, to DJ which paid for me to play abroad with my husband carrying my record bag experiencing Warsaw Poland briefly, invited to return but I declined due to MS progression to chronic! 🫣🫠
@grafter20023 күн бұрын
I now think it's progressed further than that TBH but still I continue to play as & when able for as long or short as I wish, for myself & or to myself or husband who claims to be my no.1 fan (which I ABSOLUTELY don't believe) as he's biased! 🫣🤫😉
@benhofmeister28235 күн бұрын
That could be my story! From initial symptoms, to diagnosis, to the rate of progression. I hate that I can relate so well.
@user-pu5ys9he1z5 күн бұрын
Dos swollen blood vessels in Brain come to MS.
@theMSguide5 күн бұрын
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.
@user-pu5ys9he1z2 күн бұрын
@@theMSguide Thankyou so much
@suzannemanser83527 күн бұрын
AI can be a great tool for data analysis and scans are data. This will hopefully speed up analysis, highlighting areas for a neuro-radiologist to focus on. As patients, we still need human interaction.
@theMSguide7 күн бұрын
Spot on. I am part of the ASSIST-MS trial running at Barts/RLH, Nottingham, and Birmingham. It is using an AI tool as well as the good 'ole Mk 1 eyeball to examine MRIs. The Website for it launches soon and I have recorded and edited an interview with the trial manager that will be on the channel soon.
@suzannemanser83527 күн бұрын
@@theMSguide brilliant, I look forward to hearing more about it.
@sarahdotcom7 күн бұрын
What exercises are you doing for your knees?
@theMSguide7 күн бұрын
For all the supporting muscles around that provide support. Quads, the other ones whose name escapes me. I had a lateral retinacular release on r knee when 17. Skiing bumps was unkind. Using cleated cycle shoes means they need setting up well as they can damage the knee re patella tracking under flexing.
@EvenSoItIsWell7 күн бұрын
Looking forward to seeing what happens!
@VIVIENJANEGRAY8 күн бұрын
YES. STEM CELLS ARE WHAT I NEEED.! VIVIEN GRAY!
@thres348 күн бұрын
Good luck
@rebeccascott6568 күн бұрын
You tease!
@jenniferhart9938 күн бұрын
Here for the journey. 👍
@sigurdholbarki82688 күн бұрын
Good going and the best of luck. I'm a big Iron Maiden can and their former drummer suffered from MS. God Bless and keep that attitude up!
@theMSguide8 күн бұрын
I shall run to the hills.
@suzannemanser83528 күн бұрын
Brilliant. Knee health and strength in those muscles is essential to staying on your feet and walking. I miss being able to walk. I wish I'd looked harder for an exercise form I liked. Enjoy. I hope you get the dopamine rush.
@jordan-dopado-8 күн бұрын
Stay healthy, life is beautiful ❤
@emilyrothwell23988 күн бұрын
The sound is perfect now!!🤗
@KymberleyBradshaw9 күн бұрын
Thanks for this incredibly interesting video! I'm consuming all the aHSCT content I can find as I've just been approved by the MDT for aHSCT treatment. My Relapsing/Remitting MS is aggressive enough that I have failed only two years after Lemtrada(Campath) treatment. It was a bit of a slap in the face to find out I'd no longer be suitable for Lemtrada treatment, but I am also excited and scared in equal measure about having the HSCT. On a sidenote, my partner and I are probably going to vlog the experience in a warts-n-all fashion, so anyone in a similar position can get an idea of what the process is like in late 2024. I think it would be nice to get a fix on how impactful it is (or isn't) for a partner.
@theMSguide9 күн бұрын
Kymberley - Hi, thank you for your kind remarks. Ironically, I just got off the phone with Rach 5 min ago. It has been transformative for her. Her words were, 'If I hadn't had them I'd be in a wheelchair now.' I think it is a very interesting angle. Please drop me a line at [email protected] as I have some stuff that may be useful for you. There is also an interview in the series with Rach with her husband and her talking. Best, Dom
@KymberleyBradshaw9 күн бұрын
@@theMSguide Thanks, Dom. I'll drop you a line in a bit. Please do send my best to Rach. I'd love to hear subsequent reports on her journey. :)
@roberture590310 күн бұрын
Thank you for the video Dominic, very inspirational and I wish I had known about you when I was diagnosed 7 years ago because I would have started on a stronger medication.
@candicewilliams252712 күн бұрын
How much like it get i liked com and vid?
@theMSguide12 күн бұрын
Love to help. No idea what you are saying. Please rephrase and try again. Ta.
@tommypouncey566713 күн бұрын
You never interview ugly people.
@ericstiles425814 күн бұрын
So did this end up working?
@theMSguide14 күн бұрын
The results will be published anytime. Google for it as I’m not sure which journal they will be in.
@thres3414 күн бұрын
❤ Great
@theMSguide14 күн бұрын
Stay tuned. Big improvement to the channel.
@mrunknown684214 күн бұрын
What a bunch of crap, there’ve been saying this same stuff for years and still no cure, we’re all screwed
@theMSguide14 күн бұрын
I disagree. How in touch with research are you? It is frustratingly achingly slow. But it is happening.
@valentinewhite929815 күн бұрын
I started using a cane for my mysterious chronic joint pain and it’s helped a lot, but i’m still struggling in a lot of ways. I’ve been thinking about a wheelchair for very bad days, but i still have that lingering “oh it’s not bad enough for that, I don’t need it” guilt
@cheryl20919 күн бұрын
Hi there everyone. I had a very similar problem with getting about and was forced to use a crutch, 🩼 then I had problems with it so therefore I ended up asking for a walking stick for my birthday present from my family member, as I knew I needed it but I didn't want to spend ages in pain whilst selecting one. I did also get a wheelchair for the times when I am out for longer periods of time & for the times I have gone on holiday or go out on a day trip Which is no very much I have used the stick everyday since then as I needed it which dramatically helped me. The problem is now that my legs & knees have gotten so much worse so it looks like it's time to get 😊 someone to lift out my wheelchair if my problems persist. But it is definitely worth having it for the times I need it. It is well worth getting one for the future and to 😮 take it with you on days that you would probably need it. Take care and I hope it makes your life easier and less pain in your legs. Xx ❤❤😊
@user-jz7os7wx4k16 күн бұрын
Thanks
@theMSguide16 күн бұрын
Thank you.
@trentsuveges762217 күн бұрын
Old tweaker
@theMSguide17 күн бұрын
Pmsl. You got the old bit right.
@jennaleigh3318 күн бұрын
Thanks for your upload. Only problem is when you seek out a different doctor then you're accused of Doctor shopping. Even though technically that's what it is, your viewed in a very poor light such as a drug seeking individual and looking for a doctor who will prescribe anything that a patient suggests that could help. My trust in the medical field is that an all-time low because the government keeps them from prescribing the things that patients with a diagnosis absolutely do need but are forced suffer it's the government. And Trust me, the way a majority of the medical field has been treating patients who are not drug addicts as if they are and can simply exercise, or practice mindfulness all of those things that yes do work, to some degree and are healthy practices to compliment the medications that some people really need for quality of life. I feel as if doctor knows best attitude will continue to be the narrative. Please understand that I am not saying all doctors are like that but in recent times, they are a rare find. I am in the US. Your accent tells me you might be in Europe. I know the Healthcare System is better there than here. Ty. Blessings.
@theMSguide17 күн бұрын
The aus is an entirely different kettle of fish. All private.
@aluna_m88820 күн бұрын
In 2008 when I was diagnosed at 28 years of age, I was offered Capaxone, and you know what, I said NO thank you, but I’ll stick to a healthy diet, exercise, and low carbs and it worked. But then in 2021, I had a massive relapse and I have never been the same 😔😪… damn MS, managed to catch up with me in the end 😂😂😂
@aluna_m88820 күн бұрын
How are you feeling now 2 years on being on Kesimpta? Any joint pain? Thank you
@theMSguide20 күн бұрын
I’ve passed your question onto Jacqui.
@jacquimartin571420 күн бұрын
I had a relapse in March of this year, and had the usual course of steroids. Recovery felt quicker than after previous relapses ( before being on Kesimpta ), and I have had no other issues. I'm waiting for my post relapse MRI results, so will reassess then if I need to 🧡
@jacquimartin571420 күн бұрын
No joint pain, the odd ache in my knees if I overdo things, but I've always had that since diagnosis. More so now I'm getting older! 🧡
@aluna_m88820 күн бұрын
@@jacquimartin5714 thank you so so much for taking the time to reply. I am currently on Ocrevus, but I feel as the months go on, the effects of the medication wears off, and inflammation starts running wild. ❤️
@jacquimartin571420 күн бұрын
@@aluna_m888 I do gey a 'crap gap' before the next dose, but that is mild enough to cope with, and never longer than two days 🧡
@RKO198823 күн бұрын
Is it safe to take with an SSRI
@theMSguide23 күн бұрын
I'm not a medic. I Googled 'drug interactions ssri and modafinil' Try it out (the Googling) but when it all matters is speaking to whomever prescribed the ssri (of which there are many variations)bis the most important.
@PwncakeOW2 күн бұрын
Yes. I am prescribed 400mg Modafinil and escitalopram. I recommend getting it through the do ctor instead of online. It's easy to get and generic is cheap.
@theMSguide2 күн бұрын
@PwncakeOW which country are you in?
@PwncakeOWКүн бұрын
@@theMSguide hey bud. I'm in USA.
@jeimialbino647424 күн бұрын
How you feel after you recommended are they helo you for pain in the pelvis too
@theMSguide23 күн бұрын
I’ve passed your query along to Scottie.
@grinch456728 күн бұрын
Another helpful video - thank you 🙂👍 Who’s that explaining?
@theMSguide27 күн бұрын
Dr Will Brown from Cambridge.
@grinch456720 күн бұрын
@@theMSguide Thank you - I thought it was him!!
@thres3429 күн бұрын
Best of luck - I hope it works
@theMSguide29 күн бұрын
Thank you.
@sarahdotcomАй бұрын
My previous comment disappeared. I took the 50%. Betted on DMF when the other choice was a 50% chance of thyroid issues with Lemtrada. So far the gamble has paid off. But if I could switch to Cladribine I would.
@theMSguideАй бұрын
4 in 10 chance of thyroid issues . All easily managed. I decided to take that risk for the greater efficacy payoff of Alemtuzumab. Also, I am no longer tied to a hospital for my meds. Very liberating after 4 prev meds meaning I was stuck in the UK. I can get Alemtuzumab blood tests done wherever - mostly b
@sarahdotcomАй бұрын
@@theMSguidethat's interesting! I'm at 6 1/2 years on DMF now with no relapses or changes to MRI. So I really do think the gamble has paid off in my case. Coming from highly active MS with three relapses in the year I was finally diagnosed. I suppose the fact it took so long for the referrals to come through widened my DMD options...
@sarahdotcomАй бұрын
I hate that people are put off DMF by the side effects. The very manageable side effects.
@theMSguideАй бұрын
They rarely consider them in the context of the long term payoff of starting a high efficacy as soon as possible. Have you seen the change in guidelines regarding cladribine? V recent.
@sarahdotcomАй бұрын
@@theMSguide no, I'll have a look
@theMSguideАй бұрын
@sarahdotcom drop me an email. It is the new ABN guidelines. Gavin G wrote about in the last 10 days.
@sarahdotcomАй бұрын
@@theMSguide just found it
@laurenrizzuto878Ай бұрын
I have not taken DM meds in 11 yrs. I also have not had any new lesions in 10 yrs. I follow a Carnivore diet, I don't drink alcohol, I exercise and stay positive. I refuse to put any of those horrible meds in my body. In essence, they are Chemo drugs. I stay proactive and I'm very proud to say Ai am in remission.
@sarahdotcomАй бұрын
I took the 50% (DMF). Vs Lemtrada which had a 50% chance of acquiring a new condition (thyroid issues). So far the gamble has paid off. But if I could switch to Cladribine I would.
@sarahdotcomАй бұрын
The first time I had Covid they sent Paxlovid via a courier on the same day (5pm, no point sending it earlier as I had to wait until dinner to take it anyway). The second time I had to walk 45 minutes to the only pharmacy in the borough that stocked it. And 45 minutes back.
@stephanies1474Ай бұрын
Way too many commercials on this video.
@theMSguideАй бұрын
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.
@jenniferhart993Ай бұрын
Thank you for this advise. Glad that you're feeling better.
@theMSguideАй бұрын
Pleasure
@belmakanlic1113Ай бұрын
Wish you a speedy recovery! My first covid did a number on me, triggered horrible worsening that I never recovered from. Took my EDSS from 1 to 4 within 2 years. No one in the medical system took me seriously, nor the fact that I had been using Ocrevus for 4 years at the time. Only when my fever went to 40 deegres C, I was given some antibiotics. As for my second covid, I went straight to pulmologist and did chest x-ray. Paid for it of course in private practice, because I have no faith anymore in Bosnian health care system (not after massive failure with my first covid treatment anyway). Paxlovid is not available in Bosnia, but you can get it in Croatia for a nice price of 980 euro. I've just googled it. I hope that you will get well and that covid will not give you any worsenings... Take care
@dalensyara8433Ай бұрын
Are this new discoveries planning to repair old damages/lesions ? or only acute one :'(
@theMSguideАй бұрын
This is a tough one. I was discussing this a week ago with some researchers. Myelin and lesions are two different things. Repairing a brain lesion is something I have never hear discussed. Myelin cover a nerve (an axon) and when there is axonal loss as is seen as people progress further into MS then no amount of remyelination can help. Imagine trying to build a house without foundations, you wouldn't get far. On the other hand, if there is remaining axon then the aim is to develop therapies that stimulate myelin reproduction. In the long term you'd start a DMT for MS and a remyelinating agent (for the newly diagnosed).
@dalensyara8433Ай бұрын
@@theMSguide Yes, that's right. But for me the lesions on the MRI were synonymous with myelin loss, aren't they? So, if I follow your answer, the researchers think that where there are axons left, we'll be able to remyelinate even long after an attack. And if not (how do we know) : we won't be able to do it? As for the future, all the better for those who come along, but I'm thinking above all of us, those who are already fighting every day with heavy symptoms.
@dalensyara8433Ай бұрын
@@theMSguide Because all the ms'ers think it will be for them, when they hear in every organization and research groupes "promising treatment" for remyelination !
@theMSguideАй бұрын
One thing is very clear and depressingly certain. Nothing is going to happen for people like you and me. The more they research the more complex it is. A bit like peeling an onion skin by skin.
@dalensyara8433Ай бұрын
@@theMSguide Oh wow this is so depressing... why do you say that ? You think they're not gonna be able to reverse anything ? I'm actually in a trial for remyelination.
@kevineeverhart7869Ай бұрын
Found it! Thanks Dom. I'm preparing to onboatd to Mavenclad after several years of Mayzent (with no complaints)
@theMSguideАй бұрын
Perfect
@ThewillowmoonАй бұрын
Fantastic information THANK YOU! I hope your much better soon !! unfortunately I had Covid in April not long after my infusion. 😣 I felt so ill, thought my head was going to explode but didn’t think about covid until I had a rash appear all over my legs, 🙄 probably because I hadn’t really been anywhere, but family then did say you probably picked it up in the hospital. I didn’t know about antivirals & seemed to be over the worst of it by the time I took the test & the rash had appeared, but it’s not something I wish to have again!! Any signs and I’ll definitely be phoning, I wish there was something easier in place though - the last thing you feel like doing when so ill is phoning your MS nurse, GP, 111 , pharmacist… it’s crazy but hopefully things will get easier for us? Best wishes 🫂
@asmaabma8822Ай бұрын
Thank you !! I'm sooo scared and obsessed about avoiding people wearing covid masks and cleaning my hands. I've been wondering with this antiviral was that efficient. Well thank you this is a good news. And bad to hear that you had to be thaaat patient and that insistant ! ( I live in France, it would have been way easier ) Take care
@theMSguideАй бұрын
The paxlovid is amazing stuff. Bon chance.
@sarahdotcomАй бұрын
I'm not sure your experience is things working very well! I've had Covid twice now. Both times I called 111. The first time I had a callback very quickly from my hospital trust's Covid Medical Unit and by 5PM on the day after the evening I tested positive the courier delivered the drugs. That was in November 2022. Then I tested positive again in December 2023. I was all dressed ready to run to work but I had a slightly scratchy throat so thought I had better test first. I was shocked to see a very faint second line (so faint it didn't even show up in a photo, but it was undeniably there). I called 111 again around 8AM. Again I had a call back from a clinician really quickly and was prescribed Paxlovid with no issues. She also told me to take manuka honey, I told her as a New Zealander I already had a mug of hot manuka and lemon in my other hand. The difference this time was they said the medicine wasn't coming from the hospital any more and I would have to collect it from the pharmacy. There is only one pharmacy per London borough that dispenses Paxlovid and the one I needed to go to was a 45 minute walk away on the other side of the borough. I am one of the 66% of local residents who do not have a car. There was no way I was going to get on a bus with Covid. But remember I was dressed to run and feeling quite good? My good friend N is an EM consultant and said quite firmly DON'T run Sarah. So I streeeetched out that walk, enjoying my last time outside for the next 5 days. It was a route I use often when I run, through as many parks as possible. I got home and logged in to work around 11am. I still had to wait until evening before taking my first dose. I'm not sure how I feel about this approach. Like I said most people don't have cars. I'm going to assume most people with Covid also don't feel as good as I did that day. So the whole one pharmacy per borough thing makes the antivirals really hard to access, though it was easy and fun for me as I was marathon training at the time. I have no idea how someone with limited mobility would get there and back. Also financially, I live in a very poor area and because Paxlovid is two drugs I had to pay two prescription charges. The pharmacist said if it was sent by the hospital there was no charge but there is a charge when you collect from a pharmacy. So you were lucky your hospital sent the drugs, though I'm surprised you had to wait until the next day, as you need to start it as soon as possible after your symptoms start for it to be effective. I have no idea if my symptoms would have got worse if I hadn't started Paxlovid the same day. I felt fine for my five days' isolation and just a little wheezy when I finally did go for that run. Incidentally, I hugged that doctor friend two weeks ago and she tested positive for Covid in the next few days. She spent a couple of days working from home but was then told to go in to work on what would have been Day 6, despite still testing positive and feeling rough. Sorry this turned into an essay! I hope the Paxlovid is doing the trick and you feel better quickly. It is magic stuff even though it makes everything taste so bad.
@sarahdotcomАй бұрын
PS I'm just getting over a cold so have tested quite a few times including after seeing my friend who tested positive - all negative. Covid is going around but so is a summer cold. The cold left me with laryngitis but I'm still testing negative. I've had a full on time at work so no opportunity to rest my voice, but I've decided to take all of next week off to be antisocial.
@theMSguideАй бұрын
@sarahdotcom It came on v quickly for me and moved from ‘just a cold’ to ‘this is a bit sporty’ over 12h.
@sarahdotcomАй бұрын
@@theMSguide that sucks. There was absolutely no worsening in my negligible symptoms in the 12 hours between testing positive and my first dose. But my mum has recently had the FLiRT variant and had a much rougher ride than her previous omicron infection. She caught it before she could have her autumn booster
@theMSguideАй бұрын
It was the attitude. GP and 111 were both more concerned with declaiming any responsibility and telling illogically differing stories. The fact there was a patient with Covid and immunocompromised seemed to matter for ought.
@sarahdotcomАй бұрын
@@theMSguide and it should be such a normal thing for them to deal with now. Not quite the same as me rocking up to a pharmacy and being told vaccinations/tests are only for over 70s... Oh and immune compromised (with the implication "so definitely not you")
@Muslim08-nh2isАй бұрын
o hope u get well soon did anyone sleep then suddenly woke up as if they fell off something i just did body even moves on last second of my sleep im from the kingdom od saidi Arabs had ms since 2004 or 5 not sure im on gilenya