Hi, I am new to the web site but not to autoimmune disease. I was diagnosed with SLE in 1990 after years of episodic pain, fatigue, rash,, etc. I was treted for more than 15 years with Plaquenil which really did help with inflammatioon in my hips and other joints. I also have polyarticular osteoarthritis and have had both knees replaced in the past 3 years. Last November 2011 I started having shortness of breath and pain in the tops of my thighs on exertion. I had had the same problem 2 times before 15 and 8 years prior. Both times it went away without diagnosis or treatment after about
6-7 weeks. This time it quickly got worse,like the elephant on your chest and so tired. Albuterol did nothing for my breathing. By the end of November my voice was just a whisper. I have been to Cleveland Clinic, seen 6 neurologist, 2 rhematologists, 2 ENT's, pulmonary doctor, opthalmologist, etc, etc, Cleveland Clinic rheum diagnosed PSS but only suggested treatment for dry eyes and mouth. He did the schimer's test. Its been 9 months and I am no better. Can barely talk, swallowing is difficult (esopahgus functioning at 20%), EMG diagnosed neuropathy of left recurrent laryngeal nerve (vocal chord) as to why I can't talk. Biopsy of right thigh mussle showed peripheral neuropathy. In the past I have had neuropathy of the 7th nerve with facial paralysis and neuropathy of the suprascapular nerve that lasted 3 miserable years and no treatment tried worked. If just finally went away but is back now. Today the doctor from Cleveland Clinic says only 50% of people with Sjogren's have positive blood work and he thinks I should have the lip biopsy. But he did state they don't usually recommend it in someone my age (65). They also say now that I don't have Lupus. I didn't know it could go away or maybe it just changed from one autoimmune disease to another. Has anyone had a spinal tap? I don't know waht's left to try. The day before this started I was at Curve's working out and doing Zumba. Now I barely get out of the house.
nanaone 