February 23, 2018

I am a 62 year old overweight male with Hypertension, and Type II Diabetes. Roughly 20 years ago I started to notice a numbness in my legs. This slowly progressed, but escalated much more rapidly in the last 5 years. I now have difficulty walking, my balance is impaired and blood tests show greatly elevated levels of CK enzymes and lactate acid, both indicators of muscle deterioration.

The diagnosis has been elusive: initially it was thought to be due to nerve impingement in my back but this was ruled out. Then a diagnosis of non-diabetic peripheral neuropathy was made. When blood tests revealed the elevated enzymes, it was changed to a rare condition called “Mitochondrial Myopathy.” However, a recent biopsy failed to confirm this. A DNA defect is suspected, which, for whatever reason, is only manifesting symptoms now.

My condition continues to deteriorate. My leg strength is less and less, and now even a cane doesn’t seem to be enough for walking. If there’s a wall, I use it, or if I’m with my wife, I use her arm for added support. My hands are also more affected. I have sensations (temperature sensitivity, tingling, pressure), and my finger nimbleness continues to deteriorate. Typing continues to be more difficult. Fastening buttons can be a challenge. I drop things.

However, it’s not all bad.

1. We don’t know “what might have been” without the MePA. MePA may have slowed the progression.
2. I certainly have noticed the sleep improvement others have reported.
3. I have the typical “frequent urination” inconvenience common to my age group. That has improved considerably, to an almost normal frequency.
4. My hypertension has reduced to “near normal” after years of it being worrisome.
5. Lastly, I am diabetic, but my last two A1C levels were dramatically decreased. In fairness, the decrease also coincides with an added medication, but after my second decreased level, I stopped the added medication. I will be re-tested in the next few weeks. If the levels remain low, I will know it was not due to the added medication.

April 11, 2018 Update by John

I saw the specialist again yesterday and she confirmed a few things.

The biopsy did not clearly indicate a diagnosis of Mitochondrial Myopathy, but (as it turned out) it did not rule it out either. Since the biopsy, I had a DNA analysis done and it did support a genetic defect in my mitochondria, which supports the MM diagnosis. So her official stand is that “Yes, I still believe you have MM.”

MM has a broad spectrum of presentations. I seem to be fortunate in that my condition has almost no central symptoms (respiratory problems, blindness, mental deterioration, etc.)

My A1C went back up on my next visit. But that does not necessarily contradict a benefit of MePA, because:

1. I ran out of MePA and stopped taking it, and
2. I also stopped taking an important diabetic medication as I saw my A1C levels going down (perhaps prematurely and unwisely—mostly because the adverse effects were difficult to tolerate).

But the story does not end there. Two strong diagnostic indicators of my MM are elevated lactate acid and CK enzymes, both of which I also get regularly checked. These also improved while taking MePA and then worsened when I stopped. So I am now wondering whether it is possible that the MePA was having a beneficial effect after all, and that I had perhaps not given enough time for a clinical response. My condition affects my nerves and muscles. We now know that damaged nerves can heal, but the healing is very slow. I also know that my metabolism is very slow.

So, I see enough objective indications here to warrant further investigation. I want to get more MePA and give it a longer trial at a higher dose.