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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Porphyria anyone?

Discussion in 'General Symptoms' started by JAH, Oct 31, 2013.

  1. JAH

    JAH Senior Member

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    San Jose
    Hello friends,

    I have been going through a terrible period with my health - three times calling 911 since July, with severe "attacks" where I felt shaky, dry mouth, seizure or convulsion like shaking, spasm, chest tightness and pain, trouble breathing, shortness of breath, neuropathy. Many doctors and tests finding neurological problems- POTs, neuropathies, radiculopaties, and this week testing positive for 3 porphyrins. (Urine test, doc thinks it looks like porphyria, not heavy metals) I know nothing about porphyria, but wonder if other pwcs have it, know about it, have ever had acute intermittent porphyria. I can't do anything except go from bed to couch, walk for a minute and I have shortness of breath, abdominal spasm, tightness in my throat. (My heart is fine, though I have chest pain every day). Fatigue is awful. Very difficult to have one vague misunderstood disease and yet another condition which no one can yet figure out...JAH
     
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  2. camas

    camas Senior Member

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    Oregon
    Delia and JAH like this.
  3. JAH

    JAH Senior Member

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    165
    San Jose
    Thanks camas, site very informative, J
     
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  4. taniaaust1

    taniaaust1

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    Sth Australia
    Hi, yes Ive heard of it and wondered from what I read about it if I have it.. there are many types of it. Last year or the year before the Nexus magazine had a big article (many pages) on it.. titled something like "CFS or porphyria?" suggesting that many of us have this. Ive no idea if that mag articles are online.. if not maybe some time I could photocopy the article and pm it to you, if I can find where Ive put that mag
     
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