mush_room

7 ms·

1.
by mush_room 4y ago
Believe me I've went through the entire spectrum of diets. When I first got diagnosed, the diets you would find after digging in a bit where "low-fat", and also dairy-free. I didn't stay low-fat for long, such a diet is
2.
by mush_room 4y ago
Good advice. I'm going to start LDN soon. I tried it briefly years ago but didn't feel I needed it that much at the time and I was already taking many other things.
3.
by mush_room 4y ago
Thank you, all good advice. I'm surprised with how many people get diagnosed so late. Is it failure with the medical system or were your symptoms very subtle until then? Lastly, what treatment are you on and how has it helped? (If you
4.
by mush_room 4y ago
I just remembered that I've also seen B1 megadosing used for MS, with good research. Didn't know about the link with myelin. I took it regularly for certain periods but can't say it made a huge difference, altough research sa
5.
by mush_room 4y ago
I just reread your comment and wanted to wish you prompt success on your consulting search. And consider putting an email address in your profile so that you may be contacted should your community idea materializes. All the best
6.
by mush_room 4y ago
Thank you. Could you say if Tysabri improved any of these symptoms and your age?
7.
by mush_room 4y ago
Someone posted a Discourse invite link here, I suggest you (and others) add their email addresses in their profiles so that we have a possibility to follow up on this idea.
8.
by mush_room 4y ago
I would like that to be not so but my understanding is that MS is a continuous process from the start, and that the relapsing/progressive distinction is mainly a factor of its effects relative to age.
9.
by mush_room 4y ago
I understand it might not be relevant for MS, but could you share what worked?
10.
by mush_room 4y ago
I like your attitude, I mean, specifically that you are so resourceful. I think this kind of thing can bring it out of people. I wish you all the best, friend. And thank you.
11.
by mush_room 4y ago
I'm sending you an email, but just want to mention I had a period in 2019 where I felt exactly as you describe. But then, things happened.
12.
by mush_room 4y ago
I'm putting my faith in the idea that reducing "leaky gut" is the key, along with eliminating allergens like dairy. I was doing pretty well all these years mostly avoiding coffee, dairy, and other things that increase leaky g
13.
by mush_room 4y ago
I would also like to know...
14.
by mush_room 4y ago
Thank you, I love Gabor Maté, I mean I'm sort of attached to him for being such a kind person, and I love hear him talk. I didn't know his book also touches on MS. Just got the audiobook, thanks!
15.
by mush_room 4y ago
I thought HSCT could halt the disease entirely, but I'm not sure... It's the silent progression of the disease that worries me.
16.
by mush_room 4y ago
Yeah, I can relate to your symptoms as well... I really hope you can find a way a diagnosis and a way to recover. I don't know much about the criteria, I suppose you also don't have sensory/motor symptoms. I think amphetamine
17.
by mush_room 4y ago
Thank you very much. That seems rough. For whatever it's worth, I need to share this, as I had stumbled upon this person who recovered from UC with a meat-only diet: https://www.youtube.com/watch?v=JX7LzKEMTpU . I'
18.
by mush_room 4y ago
I can't be certain, I haven't gotten tested, but the symptoms I've experienced have been gradual, and have tracked with new neurological symptoms of the sort that people with MS usually get (numbness, spasticity, etc.). Could
19.
by mush_room 4y ago
It's funny because pretty much the only thing the doctor told me when I got diagnosed was not to smoke. About the fungal stuff, I'm reminded the common saying (around MS circles at least), that "everybody's MS is differe
20.
by mush_room 4y ago
This is fascinating, as I've said for many years I had all but forgotten about the MS, and when I first started having worsening symptoms they seemed to match exactly what some of the worse afflictions of long Covid I had read about. A
21.
by mush_room 4y ago
oh, great, someone said their email bounced so I thought something had changed with Protonmail
22.
by mush_room 4y ago
I'm not in the US but I hope your post helps someone, appreciate it. Would you mind sharing your wife's experience with Ocrevus? I hear it's available where I live as well, but reflexively searching for side-effects some peop
23.
by mush_room 4y ago
I saw your posts about this searching through the archives; I'm not opposed to learning about anything, maybe you have some additional info or context, since you've posted about this several times? Thank you, appreciate your shari
24.
by mush_room 4y ago
Hey, I appreciate your intent, I feel I can sort through this fine after so many years with this. It's funny because my initial intent was collecting some speculation about _future_ medical advances (even just "AI will solve this
25.
by mush_room 4y ago
I am OP :). I really hope the future isn't so grim, I mean, to be honest it's me rejecting what is the most common outcome for people with MS, slow degradation. It pains me because just 3 years ago I was feeling so good, my brain
26.
by mush_room 4y ago
Thank you, I was just making this remark in another reply, that a move to the somewhere with constant sun would be so helpful. I need to take this seriously. Thanks.
27.
by mush_room 4y ago
That's good advice, I'm not seeking medical advice, as anyone with a long history with such a disease I'm battle hardened in this area, again, it's been a long time. To be honest initially what I was after was some hints
28.
by mush_room 4y ago
Thank you. May I ask what are you planning for yourself in the future? I've heard that HSCT is not recommended after 40. Are you on any drugs and have they helped?
29.
by mush_room 4y ago
[OP here]: It's too late to edit the message but if mods could pick it up (or anyone reading this), my email is actually mush_room_hn@proton.me not @protonmail!
30.
by mush_room 4y ago
Oh man, I don't know how I messed that up, it's mush_room_hn at proton.me not protonmail!

More ›