[raina]

Hello again, I recieved a letter from my doctor stating I very well may have hereditary sensory autonomic neuropathy type 1. I haven't been able to find much information on this. Are there any here who have this diagnosis? I found it is very rare. I have 'mild' syptoms according to the doctor...ha ha ha! I have obvious muscle atrophy mostly below waist but hands are getting thinner too. I have severe to moderate pain in feet, legs, knees and shoulders, sensory loss in feet and a few inches up my calf and some on hands, spots on upper calf and knee that are numb, high arches, hammer toes, thin boney ankles and calves, loss of weight that is due to stomach feeling full soon after starting to eat and due to muscle loss. I have normal muscle strength on PN exam but have lost much strength compared to what I think is normal. I have fatigue. I also have systemic Lupus that is under good control. I was told there is NOTHING that can be done to stop the muscle atrophy and the only suggestion was to help control the pain with lyrica which I am hesitant to start because of side effects. I take 6 - 7 vicodin/day to take the edge off pain. I saw Dr. P. James Dyke at Mayo so I've seen the expert.
Any comments would be appreciated. Raina