The story of Paula
I have recently been diagnosed with Denervation Atrophy of the muscles. I have had this condition since I was born, 53 years ago. I have been treated for something, unknown, for the past 40 years. Finally, my pcp ordered a deep muscle tissue biopsy, and the diagnosis came through. I have fallen so many times and had so many stitches, put my teeth through my lips, cracked my chin open, split my elbow open twice. There is no cure for this, at my age. I cannot even find any ready material on this, that isn’t in all medical terms. I am glad to finally have a diagnosis, however. Living with something, that is totally unknown for over 50 years is frustrating. This is still frustrating, plus there are so many things that I cannot do. I am divorced with two grown children. My son helps what he can, however, he has a 23 month old, works and his wife works. They have odd schedules, he being a police officer and she being a paramedic, plus another baby on the way.
I really wish that I could find a group that has information on this that I could discuss and talk to others with it. Also, find reading material. I would like to see if some of the other medical problems that I have are associated with this, or just regular medical problems.
If anyone has heard or knows anything about this disease, please let me know. I would be interesting to find more out.