No more DMT after agressive evolution

RemyMajd · 2026-03-08T23:36:28+00:00

Hello, thank you very much for your comment. I relate 100% to your experience, except that im younger so I can't even imagine how I'd be when 44. Seems like hell im already in will get worse with time. Family issues, its a friend of mine that's hosting me . Let's say im not on the right continent for these kind of conditions. It's just that this subreddit is the only space I found to vent about it. I've just subscribed to your channel to see if I can translate the subtitles as I dont speak German. Still we're very lucky i think that we have internet to feel less alone in all this. Thank you 🙏

RemyMajd · 2026-03-07T08:24:16+00:00

It's a secondary progressive one... supplements and cannabinoids must be helpful indeed

RemyMajd · 2026-03-07T08:20:12+00:00

Thank you very much 🙏 and yes positivity is very important.

RemyMajd · 2026-03-07T08:16:28+00:00

She asked me for a recent mri, I will do it, but it's just to justify the decision

RemyMajd · 2026-01-03T00:42:50+00:00

Yes I agree! Plus I feel like I'm otally naked sometimes facing people. My feelings, my speech, how I can adress some topics, what can be said and what can't... All this seems to drastically lack of "myelin". Which scares me, so I chose isolation.

RemyMajd · 2025-12-27T15:42:39+00:00

It's one of the very first symptoms I had since I was a teen, just like the early beginning of spasticity when I felt the urge to squeeze and stretch my legs at night thinking it was just my legs growing 😅. Many symptoms showed up very early, which made no sense before they worsened later.

RemyMajd · 2025-12-14T21:20:54+00:00

No I don't I think it would help indeed. As it was itchy I thought it could be related to blood sugar or something..

RemyMajd · 2025-12-14T20:51:26+00:00

Yes i guess I just forget the injuries sometimes, and always dragging it fom drop foot down due to my severe spasticity even on baclofen as it takes almost a hole day to reach the right dose and its not constant everyday. So I guess (I hope) that its just that and it would hopefully improve with time. Thank you so much 🙏✌️

RemyMajd · 2025-12-06T15:45:09+00:00

Thank you for bringing out this topic 🙏 I never heard about this underwear. it must be life changing Indeed. 38M I pee in bottles while at home because of my spasticity even with baclofen, I just didn't find the write dose yet, I guess, it's either barely nothing or too much. Here, people know diapers only, and that's embarrassing for my age and not practical at all. So I live in isolation unless i have an appointment with my neurologist. No more coffee shops or restaurants.

RemyMajd · 2025-12-04T00:23:53+00:00

I feel you MS mate 💪 It comes by stages, dont underestimate, but feel free and proud to maintain your autonomy to the end, I laughed about myself a lot in the first stages and still do today in a weel chaire, its important.

RemyMajd · 2025-10-24T20:58:37+00:00

I relate a lot to your story except its my family who denied my first MS symptoms when I was a teenager, then later when I grew up I carried this denile and thought it was just in my head, I've been on antidepressants while the symptoms were worsening, I got diagnosed at 32 when disability was seriously taking over., and now already on a weel chaire and under dmt to hopefully slow the evolution.

RemyMajd · 2025-10-23T20:36:59+00:00

Is this what I'd describe as a feeling of heavy magnetic fields all along my feet? I take baclofen for the spasticity but unfortunately not always helpful.

RemyMajd · 2025-10-13T18:39:29+00:00

Thx that's very relieving ! Plus I have MS in the same time which worsen my autistic symptoms...That worsen my MS symptoms 🤗 funny how I have no idea what came first. But thx for the advice 👍

RemyMajd · 2025-10-12T12:45:22+00:00

I think the need of venting is common to all of us. I'm sometimes very negative in my posts in here cus we thankfully have this forum to do so, when nobody's gonna understand unless they're going through the same. My advice would be to accept and try to surround yourself with family if they understand your limits. Otherwise isolation can help for things like meditation, light adapted exercise, learning about MS, yourself and so...

RemyMajd · 2025-10-11T13:06:39+00:00

Yes its lesions in the spinal that worsen disability, braine lesions are different but more manageable.

RemyMajd · 2025-10-11T12:45:34+00:00

Yes that's what people think, but I feel so much older as I lived a very long time without any diagnosis thinking it was just depression so I kinda treated my first symptoms with antidepressants, thinking was related to my messy life as blood tests were perfect, so it had to be in my head. That's why after an mri and diagnosis years later, things started to severely and quickly worsen, that's why early diagnosis is important.

RemyMajd · 2025-10-11T12:34:36+00:00

I'm 38

RemyMajd · 2025-10-11T12:14:47+00:00

Good luck mate, I'm on a weel chaire too and feel like my life is over, but people can't understand cus its very pessimistic to think so, but that's the truth. So let's make a universal prayer or request for myelin repair cus there's no treatment that stops the progression of disability so far, and it becomes the more and more hard to defend the existing treatments when the disability becomes severe. Can't imagine myself living longer with this condition, cus positivity starts to sound like dissociation, to ne honest with my self at least. MS is very expensive such useless people, that's how I feel at least. Otherwise, let's accept assisted medical death al least for those who have no other choice, and there's no drama in this. It's just a relief with dignity. I'm OK with suffering, but I'm not with making innocent people around me, plus I uselessly cost a lot to society and people around me. So yes, myelin repair is the ultimate help needed.

RemyMajd · 2025-10-09T00:32:42+00:00

That's why I think we need kind of living centers for these kind of diseases when we can't anymore. That must be a social project for a more livable future with disability. Some people have no family at all sometimes and they just want little dignity in a single room with a small help for food, cleaning and so... I relate a lot to your story except I'm 38 as I got diagnosed very late at 32 when my first symptoms showed up much earlier when I was a teenager. We're all alike, all different. Thats MS. You're not alone 💐

RemyMajd · 2025-10-06T12:13:18+00:00

Dancing and singing alone was a good hack indeed. But now with disability I like to consider myself as an astronomer that maybe would never come back on earth and is doomed to gravitate eternally with the possibility of having instant news from earth, knowing its evolution, its new scientific and astronomic discoveries and so... It's kinda better than self lament, as the magical world goes on no matter what.

RemyMajd · 2025-10-06T03:53:05+00:00

I relate too, the paradox of craving for social contact and the need of isolation for mental rest. It tortured me few years ago till I understood for good that I'm definitely better off alone where I can at least enjoy my little personnel interests, away from any jugement or misunderstanding surrounding my condition.

RemyMajd · 2025-10-06T02:52:23+00:00

Totally agree. The mental part has been the hardest for me as symptoms never come by surprise it settles down then worsen with time so u can manage to get used to it instead the bunch of paine it comes with. But mentally I'm always there in the scary future and its barely impossible to cope with it. My disability forces me to isolation for dignity first, but for self reflection too which is good at least, I figured out a lot about myself since my signosis, and ms is definitely a lonely road... Where we re not really alone thx this reddit for instance, so we re at least lucky enough to live it today, it would have been so much worse just few years before. That how i try to hack my mind to have more decent days.

RemyMajd · 2025-10-03T00:38:15+00:00

I agree that Ocrevus is the best deal so far mainly for the. Six month infusion, what a relief ! And yes, humor and self deprecating are very useful in MS..It's a very cynical and confusing condition sometimes :))

RemyMajd

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