dannap

I have been undergoing testing for the past five months. After having blood work and discovering my cpk levels were elevated (1601) I went to a neurologist at Columbia Presyterrian in NYC. There they did more blood work an ekg and two muscle biopsies (after the first one in my bicept revealed mostly fatty tissue only, they decided to try again on my calf only to discover it was worse). I was told by my Dr. this is a rare case for them and I recently attended a muscle rounds conference with about 14 Doctors. They all came to the conclusion of MD but are having a difficult time pin pointing which one. After my ekg they thought it was an inflammatory myopathy or MD. After finding no evidence of inflammation the inflammatory myopathy was ruled out. Most of my weakness is in my bicept and quad. It began with my arms about ten yrs ago and moved onto my legs within the past 5 yrs. I can do everything but it is extremely difficult to run, pick up my daughter, go up the stairs, get up from a chair, pick up a gallon of milk. I am completely exhausted because with the baby I have to remain quite active and it is a struggle to change her diaper put her in the high chair...Any input from anyone would be so helpful. I am beginning to feel as though I will never know whats going on. I've just been tested for fsh and lgmd and will have those results 6/4 but my Dr. said he doesn't think I'll test positive...please help...I'm trying to be patient but I'm so frustrated...any info from anyone would be greatly appreciated!!!!!!!!!!!!!!!!! Thanks!!!