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Testing for Masto and MCAD at MD Anderson

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Questus, Jan 3, 2013.

  1. stayhealthy4

    stayhealthy4

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    thank u so much,
    I am diagnosed with eds classical, chiari 1, and pots/;hyper adernergic/oi, but not sure if I do have ME or the MCAS, could those be giving me my issues/symptoms? and not caused by the eds, chiari and pots/oi? My blood test look normal execpt for the urin methyl above and the norepineprine , and my b12 was 1386. Anyone have a high b12? but I have symptoms of b12 defiency, so I do NOT understand. My doctor has not said anything more about the high b12 but I am worried from what I googled said bad things about high b12. Please if any of you had high b12 tell me what helped you get back to normal level? and coudl the MCAS OR ME be the cause of it?
     
  2. camas

    camas Senior Member

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    Oregon
    There does seem to be an overlap between hyperPOTS, EDS (usually type III) and mast cell disorders. Have you been to www.prettyill.com? Dr. Diana is a good resource for people with EDS and she does mention mast cell issues in some of her videos. There is also a forum there where you might find some help.

    I don't know anything about elevated B12 levels, but it does sound like something your doctor needs to address if they haven't already.
     
    Last edited: Nov 29, 2013

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