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    #31
    Originally posted by Stsmark View Post
    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.
    So you have MS then? Phase 3? I've heard of the MS research, but I don't have that. My cervical injury needs remyelination, though......

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      #32
      Yes I have Primary Progressive MS which is focused in my cord. It’s actually not a formal trial since the med is OTC in lower doses. As I mentioned the recommended dose is 4mg x 4 daily. They can then monitor via MRI for changes. I believe it’s been going on for about a year, in my case I have not had any MRI since starting.

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        #33
        Here’s from the UCSF site,

        1. ReBUILD - A Randomized, Double-Blind, Parallel-Group, Placebo Controlled Crossover Trial to Assess the Efficacy, Safety, Tolerability, and Pharmacokinetics of an Identified Small Molecule as a Remyelinating Agent in Multiple Sclerosis

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          #34
          Wow 16mg / day.
          I'm taking about half that on my own.
          Maybe I should up the dose.

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            #35
            Originally posted by Mitchitsu View Post
            Wow 16mg / day.
            I'm taking about half that on my own.
            Maybe I should up the dose.
            But you don't have PP MS like stsmark and that's a disease that attacks the cord, I believe, so it seems to me that the healthier you are the easier/better the body will respond to the remyelination. I can try to get prescribed 4 mg at night, but that's enough for me. I'm able to walk with a walker a little...

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              #36
              All forms of MS (RRMS, SPMS, PPMS, etc.) can have lesions in both the cord and the brain. The disease is characterized by an autoimmune response to it's own myelin, which breaks down, is replaced by glial cells, and also leads to axonal damage. The differences in the types is not in the location of the lesions, but in the speed and pattern of myelin and axonal loss.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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