Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Muscle atrophy not related to disuse

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by viggster, Aug 16, 2017.

  1. viggster

    viggster Senior Member

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    Interesting. Which test includes these antibodies? I did the CellTrend panel and some other panel with Kaufman whose name I'm forgetting. I am going ahead with IVIG after I get back home from NIH in a few weeks. My local doc wrote a letter to Medicare to get it for me. I guess Medicare does not need the prior authorization, so we'll see how many months I can get before Medicare starts getting cranky about it.
     
  2. pattismith

    pattismith Senior Member

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    I suppose Dr Kaufman tested the same panels for Ginger than for you. Did you have any positive results?
    Finger crossed you will have your IVIG soon!
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    The panel that discovered my autoantibodies (PAVAL) was done by a Neuro who sent the blood to Mayo and then I did Cell Trend on my own. But Dr. K is the doctor who interpreted my results and helped me to get treatment although my MCAS doc is the prescriber so I can do the treatments locally.

    @viggster Best wishes with your IVIG and please keep us posted.
     
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  4. Rlman

    Rlman Senior Member

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    Toronto, Canada
    Hi @Gingergrrl did you ever do an EMG pre treatment? were your creatine kinase levels abnormal pre-treatment?
     
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  5. Wolfcub

    Wolfcub Senior Member

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    I have definitely lost muscle mass. It started before I even began to feel unwell. And I always have been an active person, with weight-bearing exercise (chopping deadwood for my fire! Plus hauling it home, cutting it up.) Weights -every day. That's apart from aerobic exercise which is a part of my normal life. But muscle wasting nevertheless. It bothered me. I have always been well-muscled.
    I noticed fat loss also. I am so skinny naked nowadays. Ribs stick out, hips stick out. I thought it was just me -getting older....
    But that was before I was unwell. (last winter)
    No I haven't found a way to build back the muscle even though I continue in the face of all odds and even if I am feeling "funny turns" -to supply my wood-shed with logs for winter, and carry much water which is heavy.
    I get no pain though except in sacro iliac joint. Not muscular pain.

    I tried extra protein which was tasty but made no difference.
     
    Last edited: Jul 19, 2018
  6. Gingergrrl

    Gingergrrl Senior Member

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    I did do an EMG and a nerve conduction test in early 2016 but they were incomplete and very poorly executed. The results were pretty useless and the Neuro reported them as "normal" but when I finally got a copy it showed that I only had 57% functioning of the left phrenic nerve to the diaphragm which is certainly not normal. My CK levels were always normal (as far as I know). The gold standard EMG for my condition is called a "single fiber EMG" but I did not have this (and it would not provide any new info now after two full years of treatment and positive autoantibody tests).
     
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