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Muse

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About Muse

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    Pennsylvania
  1. Hi all, Last time I posted I think I stated my tests were negative - all of them except the sed rate, basically, Well, I saw the rheumatologist today and she said I didn't have an autoimmune disease of any kind. The dry mouth, dry eyes, hair loss were all 'due to age'. The rapid weight loss and low-grade fever were "maybe due to cancer". So she told me to go back to my primary care physician and get more tests. She also said the low-grade fever could "just be your new set point" (no, my 'normal' temp is 97.8, not 100.6). She didn't see the skin changes the other doctors did, though to be fair, I wasn't having one of my tight skin/swollen fingers days (no, my fingers decided to swell up after I got home). She didn't believe me when I told her I noticed my mouth had shrunk. She told me "to be glad" I don't have wrinkles at 58. My knees that were so creaky last night when I was mopping the floor were suddenly silent in her exam room. She didn't find crepitis anywhere even though my primary care physician did, and even though I could feel the grinding when she moved my shoulder. She found no inflammation in my fingers even though my primary care physician and his intern did. She told me I have Primary Raynaud's but my fingers "were ok" (not ulcerated) so she didn't have any other advice for me except to keep on doing what I have always been doing (wearing gloves etc). She told me my capillaries were fine. I guess she could see those without a microscope? As soon as I got home I started to run another fever. Honestly, I feel so awful. She has done a lot of research in autoimmune diseases, and even wrote a couple of papers on it. She studied at Johns Hopkins. I guess I ought to believe her. She seemed annoyed that my primary care physician sent me to her, and got angry when I told her my last exam revealed I have dry eye ("Was it an opthamologist? Did he tell you your score? Or was it just some optometrist who sells glasses??" she demanded). She told me I most definitely do NOT have Sjogren's. Basically she told me she based her ideas on the test results and her physical exam. She said there "possibly could be someone walking around with an autoimmune disease with negative test results, but that's really unlikely, especially when there are no indications from the exam." She told me my lupus test result 30 years ago was probably a false positive, especially as it was a COOMBS test. I will get the cancer tests she suggested - mammogram and pap, though I get those every year anyway. Other than that, I guess I...what? Wait until I get really sick and have to go to the hospital? Will anyone believe me then that I'm sick...with something? Sorry for the length but I just don't know what to think. The rheumatologist is well-respected around here.
  2. Hi Amanda, Thank you for those links - I will certainly follow up. Just seems so strange to me to have something autoimmune that doesn't make antibodies that people can detect. I would assume there are antibodies involved, otherwise why would I feel so ill? It's odd. I guess the key is to not give up until someone figures out what's wrong so they can treat it.
  3. Thank you, Joelf. You know, you would think "they" (researchers, I guess) would come up with some more definitive tests - I hope that happens so that none of us has to have that awful "glad it's not this but what is it?" feeling that comes with being sick and negative test results. I will look at your list of experts...thank you for that link!
  4. Thank you for your kind words, Kathy!
  5. Hello everyone, I am new to the forum and, like a lot of you, am having difficulty getting a diagnosis. I will try not to be long-winded, so in brief: ~ Diagnosed with lupus in 1991, via a COOMBS test ~ Besides joint pain, malaise, Raynaud's, and the occasional malar rash, pretty much asymptomatic for 20 years. ~ In 2011, developed dry eyes and mouth, doctor suspected Sjogren's and wanted me to see a rheumatologist. ~ Rheumatologist said I tested negative "for everything" except a very low titer, speckled, which he said could mean mixed connective tissue disease but it wasn't because I "didn't look like" I had scleroderma. He tried to get me in a fibromyalgia study and would not test further for anything else. ~ Rheumatologist later was found to diagnose fibromyalgia no matter what, just to get study participants - my doctor will no longer refer patients to him. ~ Primary doctor unable to find another rheumatologist in this area who takes Medicare, so we both decided to take a "wait and see" approach. ~ A year ago I went back to my doctor for my annual, and he had another doctor in for him due to illness, and this doctor examined my hands and asked me had I noticed they were shiny and that the skin was tight? Which, honestly I hadn't, having never thought to look. Didn't follow up on it because I wasn't really feeling ill but I did start to pay more attention to my hands after that. Only other symptom which may or may not be related is my blood pressure was spiking to 200/100 over several months, and I couldn't get it under control with diet so doctor prescribed an ACE inhibitor. ~ 6 months ago I got fairly ill with low-grade fever most nights, joint pain and malaise worse than usual, and some facial changes such as lips disappearing and mouth seemingly getting smaller, fingers go from no wrinkles to severely wrinkled at random times, hurts to type I think b/c I am losing padding on my fingertips, still have sicca, and I was losing weight at the rate of 1 pound/day without dieting. Went to doctor, who said my hands had inflammation but he was pretty sure it wasn't RA (no deformity like that, I guess). He ordered a LOT of tests. ~ Nearly all tests came back negative, except for an elevated ESR, high basophils, and low a/g ratio. All antibody tests were negative, including SSA, SSB, Sm, RNP, SCL-70, Jo-1, Centromere B, dsDNA, and Histone. ANA antibody with reflex was 42 (negative). Anti-DNA Ab, Double stranded was <1 (negative). Urinalysis was normal. RBC/WBC both normal. And so on. ~ I have an appointment to see a rheumatologist in a nearby town next month. She has interned at Johns Hopkins so she seems like she knows her stuff. She did research at Stanford on how certain cells interact and cause inflammation. I have confidence in her but in the meantime I still feel really ill. I've been really ill since April. I don't understand why all the tests came back negative. I would have bet that at least ONE would have indicated something autoimmune, but no. At the bottom of the test it said, "The possibility of autoimmune disease remains", so I guess someone saw something somewhere - darned if I know. Any thoughts?
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