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Mark

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Hello:

After several years of pursuing a diagnosis and finally being told I have a variant of progressive muscular atrophy, a muscle biopsy at recent knee replacement surgery suggests the possibility of a toxic or drug-induced mitochondrial myelopathy. Has anyone had any experience with this? My limited understanding suggests this is a genetic condition with an early age of onset. My neurologic conditions started when I was 61. I'd be thankful for any information anyone can provide.

Mark
 

patricia1

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i read that mitrhondrial myelopathy is a childhood disease that causes seizures no tolerance to exercise mild retardation eyelid droopy and muscle weakness I never knew adults can get that and what are your symptoms and did you gat a second opinion Pat
 

Al

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Hi Mark. I can't say I've ever heard of that one either. AL.
 

Mark

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mitochondrial myelopathy

Hi Pat:

The information I found is similar. This tends to be genetic and transmitted through the mother. It also appears to occur early in life. My symptoms are marked wasting, atrophy, and weakness of the shoulders, arms, and hands as well as neck extensors. I have fasiculations in the legs with no perceptible weakness although some visible atrophy. However, as I mentioned, the mitochondrial pathology was found on muscle biopsy which I had not previously had. I will hopefully know something from the electron microscopy results early next week.

Mark
 

patricia1

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Dear Mark dont you think you would have had symptoms long ago if you had that since its in is childhood disease. Its time for a second opinion i find it highly unlikely you have that maybe the results was a false positive. Pat
 

Mark

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mitochondrial myelopathy

Hi Pat:

I had previously seen four different specialists in neuromuscular disease. I am waiting electron microscopy results and my local neurologist will then confer further with one of these specialists about the results. If it was caused by a toxin or medication, as the preliminary results suggest, then the age issue is probably irrelevant.

Mark
 

patricia1

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Dear mark Did all four neuros give you the same Dx and if so do you know of any toxins or madications it could have been pat
 

Mark

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mitochondrial myelopathy

Pat:

Each neurologist had a slightly different diagnosis. None of my current medications are known offenders and I need more detailed information about possible culprits which I don't have at this point. As soon as the electron microscopy report is available I hope to work on this with my neurologists (local and consultant).

Mark
 

patricia1

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What exactly is that test about electron micro PAt
 

Mark

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Pat:

An electron microscope provides, as I understand it, much greater magnification and detail than a normal microscope. It should help clarify the original biopsy report on the muscle.

Mark
 

patricia1

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Mark so they are rechecking the tissue from your knee Thats good thats like a second opinion pat
 

Mark

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Hi Pat:

Electron microscopy findings are consistent with mitochondriopathy. I will work with my neurologist here and there consultant in San Francisco to figure out what this means and where to go with this. I haven't seen anything in the literature about treatment for this or a list medications or toxins that might cause this. I'm still hopeful that this might point to some possible treatment or at least a way to arrest the progression.

Mark
 

patricia1

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Mark Good Luck keep intouch Pat
 
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