Has no one been diagnosed w/myositis ???????

Discussion in 'Fibromyalgia Main Forum' started by decatur, May 23, 2003.

  1. decatur

    decatur New Member

    It destroys muscle and like MS/LGehrig's it weakens even throat muscles and predisposes to aspiration pnuemonia. I finally believe Mom really knew this was terminal even though I foolishly insisted it was autoimmune thyroid like I have didn't trust her prednisone rx, tried influencing her decision to continue RX-- but she was in pain--unfortunately it did more harm than expected,blood sugar is crazy she started insulin can't talk in ICU now; per DOC 1 in 1000 chances of ever going home again She was hospitalized the nite of Daddy's funeral possibly because he feared losing her to myositis after 50 years married
  2. Princessraye

    Princessraye New Member

    I have never heard of it but am bumping this post in case someone else has and can respond to you.
    Sorry you are all going through this................
  3. Shirl

    Shirl New Member

    Have never heard of this. Feel so badly for your Dad.

    Take care, and let us know how your Mom is doing.

    Shalom, Shirl
  4. pinkerton

    pinkerton New Member

    I also have myositis with the fibro but there are different types of myositis. You have to do some kind of muscle biopsy to determine which type you have.
  5. RonaEileen

    RonaEileen New Member

    I have, too. I am curious...does anyone notice the wasting of muscles? My shins are the most obvious. I've been concerned and (of course) the doctors are not too helpful.

    Rona
  6. yllebache

    yllebache New Member

    Hi,
    I have "inclusion body myositis " which is a rare type of immune disorder.There is no cure or treatment.I have fatigue,muscle weakness. I also have pain. I also have fibromyalgia.IBM is a slowly pro gressive inflammatory and degenerative muscle disease that causes weakening of specific limb and extremity muscles.My Dr. knew it was more than just the fibro when my muscle enzymes went up to 457. They are supposed to be lower than 165. I had an EMG and was then diagnosed with this muscle disease also.I also had a muscle biopsy,CAT scan and lots of blood work.
  7. yllebache

    yllebache New Member

    Hi,
    I have "inclusion body myositis " which is a rare type of immune disorder.There is no cure or treatment.I have fatigue,muscle weakness. I also have pain. I also have fibromyalgia.IBM is a slowly pro gressive inflammatory and degenerative muscle disease that causes weakening of specific limb and extremity muscles.My Dr. knew it was more than just the fibro when my muscle enzymes went up to 457. They are supposed to be lower than 165. I had an EMG and was then diagnosed with this muscle disease also.I also had a muscle biopsy,CAT scan and lots of blood work.
  8. IngaDinga

    IngaDinga New Member

    TITLE: Myositis during Borrelia burgdorferi infection (Lyme disease).


    AUTHORS: Schoenen J; Sianard-Gainko J; Carpentier M; Reznik M

    AUTHOR AFFILIATION: Department of Neurology, University of Liege, Belgium.

    SOURCE: J Neurol Neurosurg Psychiatry 1989 Aug;52(8):1002-5
    CITATION IDS: PMID: 2795056 UI: 90011107


    ABSTRACT: During the second stage of an illness caused by Borrelia burgdorferi, a young woman developed a myopathic syndrome characterised by severe muscular pains, incapacitating weakness of the proximal limb and the neck, as well as the bulbar muscles and elevated serum CK levels. Muscle biopsy revealed a non-inflammatory necrotising myopathy. B. burgdorferi infection was confirmed by a considerable rise of specific IgG antibodies. A course of high dose steroids alleviated the myalgias, but paresis began to improve only after treatment with antibiotics. Our observations confirm that B burgdorferi can cause, through an undertermined mechanism, a necrotising myopathy, in addition to the wide spectrum of already known neurological complications.

    MAIN MESH HEADINGS: Lyme Disease/*pathology
    Myositis/*pathology
    ADDITIONAL MESH HEADINGS: Adult
    Antibody Specificity
    Biopsy
    Borrelia/immunology
    Case Report
    Female
    Human
    IgG/analysis
    Lyme Disease/diagnosis
    Lyme Disease/immunology
    Muscles/pathology
    Necrosis
    1989/08
    1989/01 00:00
    PUBLICATION TYPES: JOURNAL ARTICLE
    LANGUAGES: Eng



    [This Message was Edited on 05/24/2003]
  9. decatur

    decatur New Member

    Mom's rheumy/neuro & surgeon agreed via biopsy and I assume blood enzymes,{rare blood antibodies found when typing her for 2of 3 tranfusions so far)that her dx is polymyositis I expect this is a catch all or they were talking down to her - never met her rheumy. Her GP doc was no help she doesn't follow up w/her referral docs hadn't read the report if she got one back , couldn't speak intelligently on the decision to use prednisone caused us a great deal of frustration...and Mom probably felt alone in it cause DAD target her 50 yr smking habit(2-3cigs a day) as the reason harassed her until she was nervously chain smoking when she hadn't recovered yet from 3/03 bout w/pnuemonia.Mom is trying to speak now Doc's pleased and surprised _ cautiously so though. I feel same but hoping she'll be able to do durable power atty or a will. Or it's gonna be a nitemare for her estate cause I can't pay her bills. And,..
    now I wonder if my '95 hashimoto's thyroiditis dx will progress to myositis or if I need to turn from attempting to get a fibro dx to a myositis dx. Fat chance ! My jobs have been few and far between since my brain fog, fatigue, etc took over and my family couldn't understand why I was "wasting my college degree" :{ Unemp runs out couple wks no hlth ins plus my free psych graduates in june and I'm here w/Mom until when/whatever cause all my siblings have families, jobs and thyroiditis wasted my productivity - except I do run a small vegetarian catering co w/friends in DC - it doesn't pay yet though. Sorry for going on & on
  10. nancyneptune

    nancyneptune New Member

    said in his notes at first that it was myositis, but he didn't do a muscle biopsy. It was a catch all phrase they all use to avoid saying Fibro. I finally got mad at him and asked hm if he didn't have a code number for Fibro or what! He said yes, I said, Well until you do a biopsy of my muscles you should use Fibro, Sir! N