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Muscle atrophy not related to disuse

viggster

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But I am happy you are getting involved in this thread, because I do believe @viggster and @Rossy191276 should have their auto-immunity checked against their voltage-gated calcium channels just like you were checked yourself.
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.
 

pattismith

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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.
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!
 

Gingergrrl

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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!
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.
 

Rlman

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

Wolfcub

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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.
 
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Gingergrrl

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Hi @Gingergrrl did you ever do an EMG pre treatment? were your creatine kinase levels abnormal pre-treatment?
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).
 

pattismith

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Hi...I recently had a muscle biopsy at Stanford that showed inflammatory myopathy and type II fiber atrophy..
As well as the type II atrophy my biopsy also revealed myositis but it was only in one fascicle so the report did not make any conclusions on this. ...

Additionally, I experience chest and breathing weakness (I can't pass a Spirometry test) and cant talk much of the time. This paper on respiratory muscles explains that each fast twitch (type II) exertion uses 3-4 times the ATP of a slow twitch (type I) exertion so my hypothesis is this might contribute to why type II fibre atrophies in ME/CFS or whatever subset of disease causes type II muscle atrophy and potentially inflammation:
Respiratory Muscle Fibres: Specialisation and Plasticity Polla, Bottinelli, Regianni
... I would describe my muscle weakness as a burning weakness with discomfort but not particularly painful that can affect different areas of the body more or less so at different times usually the worst being upper legs and chest but currently it is also bad in my arms/hands.
I found incidentally another potential cause for fiber type 2 atrophy (fast fibers): Myotonic Dystophy.

DM2 especially affects upper legs and can produce burning legs pain, exactely what you describe.