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I was diagnosed to have Lambert-Eaton Myasthenic Syndrome in 2004.

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Guest
Guest

I was diagnosed to have LEMS in 2004. I am in a Clinical Trial using 3-4 DAP 30mg 4x a day, some Mestinon and some Predisone (15 mg). I have strogner days and weaker days, complicated by the fact of a right knee replacement which is doing well with Patient Therapy 3 times a week. So far, no SCLC has been found. I did have Colon cancer in 1977 and Prostate Cancer in 2003. None have returned. My biggest symptom is the fuzzyness I always feel in my head, around my eyes which prohibits my reading. I am medicated at least three times a day, 8am, 1pm, 6pm and often at 1am due to the onset of weakness. I drive short distances to the drug store only. What is considered to be too large a does of DAP? I understand you can take too much. I am 78 years old and was in my late 70's when this began and was not siagnosed as LEMS but as Spinal Stenosis.

[i:8b9001694b]This message was automatically imported from the original Patient Experience[/i:8b9001694b]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Could you please tell me what Clinical Trial you are in. I have been trying to find a trial that used 3,4-Dap

    Thanks

    Eldon

    [i:639ba00c47]This message was automatically imported from the original Patient Experience[/i:639ba00c47]

  • Guest
    Guest

    Posted

    Dear friend,

    My husband has LEMS and is 55 years old. We figure he has had it since before he was diagnosed in 1995. He does not have the SCLC either nor any other cancer that we know of yet. He too tried DAP and could not tolerate it. I believe you can find the dosages from a physician which i just saw posted there at the website: www.emedicine.com/EMER/topic292.htm if that does not work try just www.emedicine.com. Type a search for DAP dosages. Take care and hang in there. You are not alone.

    Zaneta and Steve

    • jasmin_83782
      jasmin_83782 Guest

      Posted

      Hi I'm jasmin and I am 24 years old I got diagnosed with lems about 2 year ago !! Have had no body to talk to and feel so alone !! My mobility has deteriorated as with everything else ! I'm also on prednisolone and 3:4 dap and have treatments every 4 weeks through drip !! I have a 5 year old daughter!! I do struggle so much ! It feels a constant battle for every day to day activities !! Would be overly to actual talk to some one who knows how it feels !!!
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