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[SIZE="4"][FONT="Fixedsys"]I am now 41 years old. My symptoms started 3 years ago. I am unsure what is wrong with me, Rheum. discharged from seeing me telling me it is not a Rheumatic disease??? My ANA is very high 1:2560- My SSA elevated to 68 and all other tests are basically normal. I have ptosis, 2 surgeries last year to lift my eyelids and I had a catarac in my left eye removed 3 years. I have an uneven face now, seems droopy on one side and face is stiff feeling like tight muscles. My left side of body is weaker than right and my left leg drags. numbness and tingles strange feelings on legs at times, things crawling on me, hairs standing up feeling, etc. I have thinning of hair a few times a year also. I have clonus from the spasticity in my legs and lower arms, my fingers and feet feel numb. I have these things daily but they become severe during excerbation. I start with increased fatigue, night sweats, tremors, droopy eyelids, pain, the pain in my legs, joints, bones, nerves is overwhelming. Headaches in the back of my head into my eyes. My cognition and memory is bad, I also stutter or slurr words at times. Eating or cooking dinner is less becuase I am just too tired or takes too much energy to eat. I had all tests done you can imagine Blood and MRIs and Spect scans, all are normal basically but the ANA and SSA. I take Provigil for the fatigue, zanaflex for spasticity, wellbutrin for depression, Percocet for the pain, and my blood pressure meds and zantac, etc. I am sure I am forgetting to add much info in this email. I also get reddened cheeks, like when a person is hot, it comes and goes. I have a very hard time getting to a standing position when sitting, I use a walker with wheels to help me up when I am bad. I have positive babinski in both my feet. Neg. MRIs and all other blood tests negative, any ideas?....It has taken over my life when it is exacerbated and i am now starting another episode. I am unsure whether to call my Neuroligist, I hate prednisone. He is the only one seeing me now. The Rheum docs told me NO LUPUS becuase I did not have the other positive antibodies and they refused to diagnose without the other positive blood tests. I seems to have many of the other symptoms. I also get crusty circular scabby itchy things on my arms and legs...I always thought eczema? but who knows. Ulcers in mouth or mostly throat and is sore alot. I also lose my balance, and things move that are not moving....I just start to fall over and do not realize it until I am about on the ground. I do fall several times a year. I feel like I got bricks on my chest when an exacerbation starts, a heaviness....shortness of breath kind of like I cant get enough air in......I am confused with what is wrong with me, noone is telling me anything but to wait that it can take years for a diagnosis...and I feel an exacerbation coming on now, it is a scarey feeling not having control of your own body and the fatigue overwhelming that you can hardly get off the sofa, the pain is terrible. Also during an excerbation I get so cold and it seems nothing I do can get me warm, especially feet and hands, then when I finally warm up, I am over heated HOT, my feet burn and hands? Please any help....suggestions?...I read your stickies about diagnosis criteria, I fit many or more than 4 of them....MichelleAnn[/FONT][/SIZE][SIZE="4"][/SIZE]





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