TXfmmom re: Myasthenia Gravis dx

Discussion in 'Fibromyalgia Main Forum' started by JenniferAnn539, Apr 6, 2006.

  1. JenniferAnn539

    JenniferAnn539 New Member

    TXfmmom,
    Could you please let me know how your initial diagnosis of Myastenia Gravis was realized to be something other then Myastenia Gravis?

    I have CFIDS and my father has Myasthenia Gravis. I am aware of the similiarities of the symptoms. Regrettably, I have not been able to get involved at all with my father's treatment or care because I am so sick. I have wondered if the diagnosis of Myastenia Gravis is correct.

    Can you give me a little background on MG vs your current dx?

    Thanks,
    Jennifer
    [This Message was Edited on 04/06/2006]
  2. TXFMmom

    TXFMmom New Member

    i DO NOT KNOW IF MY POST WENT THROUGH.

    MY HANDS ARE NOT DOING WHAT I WANT THEM TO DO.

    However, I had to have my lab tests repeated three times and an EMG and a muscle biopsy done by the world famous neurologist I went to before he gave up the diagnosis.

    That was after I went to another well known neurologist, just told him I had been diagnosed, but refused to tell him by whom, and had the labs, the EMG, and the muscle biopsy repeated by him. He found that none of the stuff matched Myastenia.

    Only then, when confronted, did the first guy say it was not myastenia and then switched it to atypical MS. That did not pan out either, fortunately.

    I then, was told my an orthopedic surgeon, who had known and worked with me for years that he had watched me change and he was sure I had fibromyalgia. I AM ASHAMED, THAT AT THE TIME, I DIDN'T KNOW WHAT IT WAS.

    That was, however, 1993.

    After the doctors fought back and forth over that, I went to Dr. Thomas Romano, one of the Rheumatologists who were on the board which developed the diagnostic standards for FM, and he told me FM.
  3. JenniferAnn539

    JenniferAnn539 New Member

    Txfmmom,

    Thanks so much for replying.

    I have a couple more questions...

    What symptoms did you have that lead the doctor's to believe that you had MG? Where you lacking any symptoms that are normally seen in MG?

    I know that my father said that there was not a level of full certainty that he has MG, but he is taking all the drugs for it. I am wondering if he should be looking else where for a dx and treatment.

    Thanks in advance for your help.

    Jennifer
  4. TXFMmom

    TXFMmom New Member

    MG can be difficult to diagnose.

    I had eye lids and drowsiness, which can be due ot the weakness due to enzyme loss in MG. However, all of us have that, especially late in the day, and that is when I saw the doctor.

    I had developed loss of strength in my hands and arms and legs, and I had a grip, prior to that, where I could bag a patient for hours.

    I also, supposedly had this tongue thing going, which indicated MG. Sometimes, when I am talking, my tongue just doesn't quite work right, and my saliva thing under the tongue sprays like a pit viper. That can be MG, but it can also be FM or some other things.

    My tongue, when I stuck it out, did some weird things, which can indicate MG.

    However, there are specific enzyme tests which should be low for MG. Additionally, certain nerve and muscle conduction abnormalities should be pinpointed with EMG's, in order for a firm diagnosis.

    A muscle biopsy, where they test the muscle, and look for changes, and do levels on emzymes, etc. should also say yea or nea, unless they are close.

    ONE SHOULD, HOWEVER, BE ABLE TO GET A FIRM DIAGNOSIS WHEN ALL THESE TESTS ARE NOW COMPARED. I HAD THIS HAPPEN IN 1993, and testing has improved since then.
  5. JenniferAnn539

    JenniferAnn539 New Member

    Thank you so much!

    That was very concise information and I really appreciate it. Now, without doing a whole lot of research on MG, I will be able to ask my father questions with the information that you have given me.

    Once again, a big thank you!

    Jennifer

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