First time poster - questionable diagnosis and have some questions

[Guest guest]

Hi,

Just joined and this is my first post. Have been having muscle problems

for years and one neurologist (out of the many I've seen) thought I

might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

recently because of increase in symptoms and he again reiterated that he

thinks I might have MM. The evidence for this diagnosis is pretty

spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

proliferation and possible excess lipid (disputed by 2 other hospitals

that reviewed it and biopsy in 88 was considered normal), slightly

reduced NADH on respiratory enzyme study of biopsy and an occasionally

elevated serum pyruvate level (but lactate has never been clearly

elevated).

I have had mild, fluctuating muscle weakness going back about 25 years,

as well as intermittent problems swallowing and with speech, and even

breathing (with fluctuating pulmonary studies). In the 80's I had 2

EMGs that suggested ALS or motor neuron disease but most EMGS, including

the most recent ones, have been basically normal. However, I have a lot

of twitching and possibly some atrophy, so am concerned I have ALS or

some motor neuron disease rather than MM. Of most concern is noticing

what appears to be changes in surface of tongue - increased irregularity

that I think is the kind of atrophy seen in ALS. I'm skeptical of

the MM dx (as where other neurologists back in the 90's when this neuro

first suggested it. This neuro is a neuromuscular specialist who now

heads an MDA clinic.

So with this long-winded introduction, would like to ask these

questions: Anyone with MM have weakness, twitching or atrophy of the

tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

neurologists at some point? Anyone with occasionally elevated pyruvate

but not lactate? Neurologist suggested (again) I take antioxidant

cocktail, particularly CoQ10. This can be rather expensive, so can

anyone suggest a place to get it (and possibly other supplements) at

reasonable cost, but still good quality? What doses are people taking

it at? Read that Idebenone (derivative of CoQ10) is cheaper and

possibly more effective than CoQ10. Anyone using it instead?

Thanks for any feedback

Randall