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Periodic Paralysis, myotonia, channelopathy and ME

Discussion in 'Neurological: Multiple Sclerosis' started by Jenny TipsforME, Nov 26, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    This is a great question and even though I have been diagnosed with a calcium channelopathy, I do not know the answer and do not think that any doctors do either (except maybe Dr. Angela Vincent in the UK but I have given up that I will ever be able to reach her).

    This is a great question, too, and in my case, I had the same questions re: calcium and re: meds and supplements that block the calcium channel (like Magnesium). Neuros do not agree b/c they do not know. I think medicine will eventually catch up but not sure it will be in my lifetime. The ultimate consensus for me was not to take meds that further block the CA channel (although I do okay with a small amount of Mg Malate in pill form).

    I agree and just b/c of lack of funding it does not mean that these disorders are not real or should not be taken seriously.

    I think it is okay to post in both places b/c each board has different members with different areas of expertise.

    @JaimeS This really describes my situation (channelopathy, autoimmunity, and antibodies to the muscarinic/cholinergic receptors) and I am glad to hear that this research has not fallen off the map. I just wish I understood more about it and if there were other treatments that I could be doing (even though I feel that I am on the right track with what is known at this time in medicine).

    Everyone always thinks of MG first, which makes sense b/c it is more common, well-known, and accepted by modern medicine. I was also tested for MG and MuSK auto-antibodies and they were all negative. My understanding (and I hope I do not screw this up!) is that the MG auto-antibodies affect the nicotinic receptors vs. the other ones affect the muscarinic receptors (but only the MG/nicotinic ones are tested for in the US) which is so odd to me. Hoping Jaime can correct me if I got that wrong.

    How are they treating your diagnosis of "Myasthenia" (or are they not treating it since the Mestinon did not work)?

    ITA and without money to fund these studies, so much good research will be lost forever.
     
  2. Webdog

    Webdog Senior Member (Voting Rights)

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    Not treated.
     
    Inara and Gingergrrl like this.
  3. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    Why am I not surprised? ;):banghead:
     
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