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Thread: Rmyelinating drug already FDA approved

  1. #21
    One last thing to add. The studies I read talked about a dose of 8 mg. That is why I am taking 6 pills per day. They are only 1.3mg each. So I am right under 8.

  2. #22
    This is so interesting that you're taking so much and not feeling side effects! I'm taking a half tab in morn and half at night and sleeping real well. I'll keep you updated too...

  3. #23
    Senior Member
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    What brand are you guys taking?

  4. #24
    Quote Originally Posted by Sparky831 View Post
    What brand are you guys taking?
    clemastine fumarate 1.34mg tablets 100 cnt per box , Clamist. Buying them from a guy online. For all I know they could be sugar pills but there are tons of positive reviews from people who purchased, so I'm thinking it is legit...

  5. #25
    Ok people ...keep us posted???!!???
    BTW there is completely different mechanism in action with potassium channel blockers (4-AP, (F)Ampyra, 4-AP-3-MeOH)
    as they are MIMICK myeline presence and they are not recovering myeline damaged sheet. As soon as person stop taking
    4-AP or any of potassium channel blockers same random conduction will return into spasm state with less control.
    Why the most potent 4-AP-3-MeOH was nevertaken into human trial I had posted my findings and opinion here.
    Information that there there is drug that will actually make damaged myelin sheets to recover is novel to me
    and it is FANTASTIC OPORTUNITY for incomplete SCI if it really works!!!!
    www.MiracleofWalk.com

    Miracles are not contrary to nature, but only contrary
    to what we know about nature
    Saint Augustine

  6. #26
    Quote Originally Posted by comad View Post
    Ok people ...keep us posted???!!???
    BTW there is completely different mechanism in action with potassium channel blockers (4-AP, (F)Ampyra, 4-AP-3-MeOH)
    as they are MIMICK myeline presence and they are not recovering myeline damaged sheet. As soon as person stop taking
    4-AP or any of potassium channel blockers same random conduction will return into spasm state with less control.
    Why the most potent 4-AP-3-MeOH was nevertaken into human trial I had posted my findings and opinion here.
    Information that there there is drug that will actually make damaged myelin sheets to recover is novel to me
    and it is FANTASTIC OPORTUNITY for incomplete SCI if it really works!!!!
    I am just about 2 weeks in and plan to use the meds for about 6 months. I will certainly note any changes as time goes by.

    Obviously it'll be anecdotal evidence. But that is all I have. I am lucky enough to be fairly incomplete and walk pretty well on a treadmill. I do about 30 minutes a day and I'm trying to build that up to community walking. So I don't know if I will ever be 100% sure gains are attributed to time and exercise versus the medicine, but I think we all know ourselves pretty well to take things into account...

    When I'm done with this I would love to switch to 4 - AP. Unfortunately I'm having a very difficult time acquiring it.

  7. #27
    I am seen at UCSF MS Center for PPMS. I take both 4AP and Clemistine Fumarate daily. 4AP for roughly 8 yrs. CF about 9 mos. No issues, and no hesitation by my Docs to prescribe both. It?s subtle but there?s noticeable improvement in strength and control. I have both compounded locally.
    The recommended dose of 4AP is 10mg x 3 daily, I do 2 in the morning and 1 in the afternoon. Be very careful with 4AP as overdose is very bad to fatal. Long story but I know from first hand experience.
    The trial dose of CF is 4mg x 4 daily, 2 in the AM and PM. I only take it as 2 in the evening.
    Last edited by Stsmark; 11-24-2019 at 09:47 PM.

  8. #28
    I am going to try and combine following regimen.

    I have ordered lions mane to be taken orally and going to visit my doctor to get script for clemastine.

    My local therapy has the device to stimulate my spine (Edgertons approach) and I am able to do stim and standing frame combined once at home. So lions mane+clemastine+edgertons stim+buspirone (if compatible during stepping/overground walking) +standing and empi at home.

    Drug (buspirone) to stimulate CPG is also available and I will be looking into it as well. Also I've been told peptides Dr Silver talked about might be available commercially as well but still need to work on that portion and discuss it more if true.

    After being sidelined for a while I am looking forward to trying something new in combination approach.

    (I've also found reddit thread about micro dosing psilocybin that helped with regaining of b&b but I highly question that) I have experienced spasms with my mostly flaccid paralysis during one large dose so I need to do more research into that as well but it does have some effects on my nervous system.

    If anyone has any input or advice please let me know. I know it would be good to isolate each input to see what it does but I am so desperate for any return if safe I'd rather combine it all. I've read a paper about transcutanoeus stim and it said combination approach is most likely to be most effective. (they outlined stim+buspirone+exo)

  9. #29
    Hey stymark, what CF trial do you mean? Your own or a clinic's? I'm only prescribed 2.36 mg at night and don't know if I should or even could ask for more......Jan

  10. #30
    Hi Jan,
    Its a trial/ study thru my clinic at UCSF in San Francisco. I’m really fortunate to be seen there. Being so high profile they’re almost always involved in any new MS research.

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