ltr said:
Rob,
I will get a hold of you privately, but for the forum's sake, can you tell us how you were diagnosed with myopathy? I had clean EMG and CK's, but muscle biopsy was positive. The good news is that a muscle biopsy with inflammation should not ever be als, at least that's what the neuro said!
While I did have one normal EMG, three others showed small motor unit potentials, which from what I understand is indicitive of myopathy.
While my biopsy showed prior dennervation/reinnervation & did not show inflammation, it did show lipid (fat) storage in the muscle, which is indicitive of a metabolic myopathy.
I do not have myogloburina (rust colored urine) or elevated CK indicating muscle tissue breakdown that you'd see in many myopathies, but I have had excercise intolerance for 7 years (extra extra sore for days with any sort of real excercise).
I also had an abnormal lactic acid test. Actually the first lactic acid test I did (forearm aschemic test) was normal, but then I had a more reliable full human peformance lab test where they put me on a treadmill, measured my heart rate, oxygen utilization, etc. & took blood before and after. What they found was not lactic acidosis which is common in many metabolic myopathies, but the opposite - my lactic acid levels didn't increase very much - about half the level of normal.
Motor Neuron stuff has come on in the last year - brisk reflexes, spasticity, awkward gait, cramps, weakness, fatigue, etc.
The doctor I saw at the Cleveland Clinic had never seen a myopathy + metabolic disease before so I guess I'm some sort of superfreak
On the upside, I figure if I can't do anything about the motor neuron disease at least maybe I can do something about the metabolic disease.