Hi,

I am trying to decide the best location to go for a better diagnosis of my metabolic myopathy. I have had biopsies in 1983 and 1999, which found some abnormalities but did not provide a specific diagnosis
beyond metabolic myopathy, possibly mitochondrial in origin.

My condition has worsened the past few years, although I still function fairly well. My 6 year old son has recently showed up with myoglobin in his urine, which has provided the impetus to better sort things out.

I have narrowed down going to Washington University in St Louis (Dr. Pestronk), Presbyterian Hospital of Dallas (Dr. Haller), and Horizon Molecular Medicine in Atlanta (Dr. Shoffner), based on a search of the relevant medical literature.

Has anyone had experience at these locations, or other to recommend. I am particularly interested in a location in the South East, if possible.

Thanks!

welcome Mike,

I hope some of our members are able to help you.