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jenksky

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For those who have had a muscle biopsy that confirmed your als diagnosis, can you share? There isn’t much to be found on the web and I am curious about mine.

Here is mine, which I am waiting and fearing the worst with “deinnervation with associated reinnervation.” In addition to this, I have fasiculations, muscle weakness, atrophy, voice changes, brisk reflexes, essentially normal EMG, and normal bloodwork. From my “dr.google” research, it seems to point to ALS, but I am no expert.


“Most muscle fibers vary between approximately 10 and 100 micrometers in diameter. Fibers smaller than 25 micrometers occur singly or in pairs. Rare fibers are highly atrophic and consist of clumps of nuclei surrounded by a thin rim of cytoplasm. Necrotic and regenerating fibers are not present. A few mononuclear cells are present at a single endomysial site. The connective tissue elements are unremarkable.
In NADH dehydrogenase reacted sections, very rare highly atrophic fibers overreact. Succinate dehydrogenase reacted sections yield no additional information. Cytochrome c oxidase negative fibers are not present. In ATPase reacted sections, the random distribution of histochemical fiber types is disrupted by slight grouping of type 1 fibers. The atrophic fibers are of either histochemical type. Type 2B fibers have a slightly smaller mean diameter than other fiber types. There are no unusual increases of acid phosphatase. Myophosphorylase reactivity is preserved. The muscle fiber glycogen and lipid contents are normal. Very rare atrophic fibers slightly overreact for nonspecific esterase. Congo red stained sections viewed under rhodamine optics reveal no congophilic deposits.


Diagnosis: Denervation atrophy with associated reinnervation, slight.

Comments: The very rare atrophic fibers of either histochemical type, a few of which overreact for nonspecific esterase, and the group of type 1 fibers indicate a very slight denervation with associated reinnervation. There is no evidence of a myopathy in the available specimen.”
 

ShiftKicker

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Mod note: Placing in the DIHALS section.

Will you be going over this with your doctor? What are the next steps with regards to testing?
 

jenksky

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I have an appointment scheduled next month...pretty sure I’ll have a phone call into the doctor tomorrow. I’ve had a long time to prepare myself if it is indeed ALS.

She was sure it wasn’t ALS and didn’t give me much consideration before the scheduled biopsy. Said the biopsy would be “low yield” and didn’t think it would show anything. Not sure what’s to be said. She was my second opinion that I had to fight hard to get.
 

KarenNWendyn

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The “essentially normal EMG” argues against ALS. A muscle biopsy is mainly done, if indicated, to rule out other causes of your symptoms. Generally they are looking for a myopathy, and that appears to have been ruled out. I don’t think one can diagnose ALS from the muscle biopsy when the EMG is essentially normal.
 

LizF

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Hi, Jenksky

My final diagnosis of ALS was based on my muscle biopsy, but I did not receive the results of the biopsy until I sat with the diagnosing neurologist. So, I'm sorry I cannot interpret yours for you. I do know that "Denervation atrophy with associated reinnervation" can also point to a chronic neuropathy as well as motor neuron disease.

And I will say that prior to having a muscle biopsy, I had three "dirty" EMG's. I had presented atypically for ALS and at first, I was given a likely diagnosis of polymyositis. As an EMG is considered a gold standard for diagnosis, and you say yours was "essentially clean", this would seem to point away from ALS despite your other symptoms.

Of course, only your doctor could say for sure, and there may be someone here who can give you more insight into your muscle biopsy.

In any case, I do hope you get favourable definitive results soon.

Best,
Liz
 

jenksky

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Thank you all!

Still no answer today. Evidently, Mayo can still make mistakes in all it’s glory. The report wasn’t visable to the doctors...only myself, so they are backtracking to IT.

I believe waiting is worse than knowing. I am staying busy in order to keep my mind from wordering. Hope to hear something tomorrow.
 

swalker

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I believe waiting is worse than knowing.
Waiting was hard, but knowing was worse, for me.

My muscle biopsy results were normal. It was done as the doctors were attempting to find other potential explanations for the weakness I exhibited.

The muscle biopsy was just one of many, many tests I had.

Hopefully, you will get good news. In the meantime, live life to its fullest. I encourage everyone to do that, whether or not they are diagnosed with a dread disease. Don't waste a day!

Steve
 
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