no answers and getting very sick

[mamaberger]

Among a host of neurological symptoms I have auto-immune type symptoms. My two sisters have celiac ( I have tested negative) and one sister with ra and sjogrens. Can anyone tell me what immune diseases cause thinning and shiny skin on hands and feet, redness in hands and feet, and tapering of fingers. Scleroderma has been mentioned but I don't have any of the symptoms that go with it. I was pregnant and symptoms were worse and I had a positive ANA and then after pregnancy was tested and test for ANA was negative. I have given up on doctors as they were first telling me was all in my head to see a psychiatrist. My last GP saw progression but had no clue what I had and was not to eager to find out. I have muscle loss and twitching memory problems yet all of the testing I have had has been negative except the ANA. When this first started my hands both swelled up like balloons and my serum iron went high which from what I have read can happen with inflammation. I am guessing with my family history I would be prone to this but no doctor knows what I have and none cares to find out. I have seen 7 neurologists and all of there tests are normal except I have brisk reflexes but they say that's just how I am but I never had this till I got ill. I have had tests for ALS, MS,, had mri's.nerve conduction,all normal. I saw one reumatologist but he was ignorant and did not care. I was just looking on the computer under rate your md and in my large city he has the second worst rating, so maybe time to see another reumatologist because I am getting no where with neuro's. Anyways if anyone has heard of this or knows what it could be please let me know. I also have swallowing issues, sensory issues with my skin, my smile is shrunk(I get twitches and everywhere I get twitches I get shrinking) It's all very odd my old GP says i may have something 100 people in the world have so no doc is able to recognize my symptoms and they don't fit normal pattern, hence them telling me I'm nuts in so many words. It has been six months since I have seen I doctor because I moved and my old gp was the only one who could see I had a serious problem and I am scared to get told is all in my head. Now my hands and muscles have progressed so no intelligent doctor can deny what I am telling them. Sorry for rambling, any suggestions much appreciated. Mya

[mamaberger]

Does you mom experience muscle twitching, thin shiny skin? I thought sclerodrma is thickening of the skin? Has your mom had muscle loss in her hands and arms from scleroderma? Thanks for you comments, Mya

[Treecie]

Hi Mya.

I am terribly sorry to hear of the trouble you have had finding a good doc. Autoimmune diseases can be very difficult to diagnose. Your symptoms sound a lot like scleroderma. I would start with a good rheumatologist though. My mother, who has RA, scleroderma/lupus, basically got the run around until she found the excellent rheumatologist that she has now. Initially, she had trouble with her hands, feet, and knees. Her GP diagnosed her with carpal tunnel and sent her to a hand specialist who performed surgery on her. We later found out that was the worst thing they could have done. I know how frustrating it is to know something is wrong with you and not have a dx to back it up. Whatever you do, don't give up...keep searching until you find the right doctor that will take the time to listen to you and monitor your symptoms appropriately. Sorry I couldn't be of any real help.

Good luck.