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Found 7 results

  1. Hello, I really hope that you guys can help me a bit with following problem: One year ago I went to my rheumatologist because I had stiffness in my fingers and pain (in the morning and also in the night). It always gets worse in summer when It gets warmer (it is somehow also linked to sweating). There were days when I could barely write because my hands felt puffy, started to sweat a lot and were extremely stiff. My doctor found out that I have scl 70 antibodies, my ANAs have been always negative (I do regular check ups), no rheumatoid factor, all other Blood values are good. My doctor said that he doesn’t believe I have scleroderma but I am not imagining to have pain and the stiffness; when I am stressed or did a lot of physical activity the pain and stiffness spreads to my feet. I have the symptoms of my hands for 4 years now and nobody seems to understand it or is willing to help. I am a medical student so I did a bit of research and found out that scl 70 is mostly specific for the diffuser type, I went to a lot of doctors and got my organs checked, everything is fine until now, I don’t have lung involvement, my heart is fine (apart from a mild congenital regurgitation) and I do not have Raynaud's syndrome (I did a capillary bed examination). My rheumatologist said that I should not worry and he doesn’t want me to come again because, as I said, he doesn’t believe I have scleroderma. I am really worried and afraid. Even though I am mostly fine and "just“ have the symptoms of my hands, I worry that soon it might get worse and affect my organs.. well, sooner or later it will because I have the antibodies. My question is if I should do regular check ups of my organs (each year) and if some of you have had similar symptoms at the beginning and how long it took in your case until the disease spread? Oh and I have hashimotos disease, I don’t know if that’s relevant. Thanks in advance
  2. Hello. First post here. I am having some concerning symptoms and blood work and my various web searches have brought me to this forum. I am 42 years old and have had Hashimoto's thyroiditis for about 25 years. I have been taking thyroid medication since then and have monitored it closely. My current symptoms are mild Raynaud's, mild dry eyes/mouth and fatigue. I also have a serious case of Oral Lichen Planus which began about 3 months ago and is only getting worse and more bothersome. I am prone to tendonitis which resolves with rest. I do not have any skin thickening, joint pain, digestive or lung issues at this time. It was the Lichen Planus that caused an ENT to check my ANA and when that came back positive I saw a rheumatologist to investigate further. My blood work shows a low positive ANA (1:80), positive ACA (around 3), Hashimoto's antibody (can't remember the name) and deficiencies in the c3 and c4 complements (associated with lupus). I am negative for all of the antibodies that typically point to Sjogrens or Lupus. My rheumatologist just gave me the diagnosis of Undifferentiated Connective Tissue Disease (which from what I understand means she doesn't know what is going on but it could turn into something specific in the future). She is most concerned about the low complements. She was not particularly concerned about the ACA which surprised me. I find that very scary from what I've read! She says that the Lichen Planus is unrelated and says it should just be treated with steroid creams. But Lichen Planus is also an autoimmune disease from what I understand. I am going to re-run my blood work in early Jan and then see her again to consider whether or not I should go on Plaquenil. She said it might help with the fatigue and possibly prevent some problems in the future. At this point I am feeling very lucky that I am not feeling too bad but at the same time I am scared about what the future holds. I have 4 young kids and I'm worried how this might impact them. I know that no one can diagnose me over the internet but if anyone has any insights or suggestions on what I should ask my doctor, or perhaps additional tests I should ask for, I would be very grateful. Thank you so very much!
  3. I am new to the forum, and need advice, help, consoling. 10 years ago I was diagnosed with Fibromyalgia and chronic fatigue. Then a heart problem, tachycardia and an intoleration to exercise, I was put on an inhaler. Then I passed out and was diagnosed with MS and put on several medications to control it. Eventually, I started choking on my food, it felt stuck in my chest and I would have to vomit it up. This started happening on a regular basis and I finally went in to have my esophagus stretched. I was told that this is not common with MS. I had some scarring, GERD, and a hiatal hernia. I was put on Prilosec. About 5 months later, they had to do it again. Then I fell down a flight of stairs several times and ripped something in my shoulder and needed surgery. During recovery, I healed so fast that my PT said I have Ellers Danlos Syndrome and needed to get it checked out, except for the fact that my skin is to tight. No elasticity in my skin at all. At the doctor, we discussed the E.D.S and which one I have. In our talk, I mentioned that I was experiencing choking again, sporadically, some swelling in my hands and feet with major pain in both upon waking up, mouth ulcers all over my tongue and in the corners of my mouth making it impossible to open my mouth to eat. My hands are always dry and will get a puckered look on my fingers. He ran a bunch of blood tests. As the results started coming in, they all were good. Then he called, my CRP was elevated, my Sed Rate was up, and my SCL-70 was positive at a 7.6. So now, on top of everything else, I have this to deal with. My appointment with the Rheumatologist isn't until October, so I wait. Worried every time I start hyperventilating when I walk up some stairs, or on a walk with my family. Watching my mouth for more ulcers or when my tongue starts hurting. Stress is high as I also found out my son has a Chiari Malformation that needs surgery, at least I can focus on him for a bit. Thanks!
  4. Hi! I am a 30 year old female with 1 child. I had an ANA test because a doctor wanted to make sure my silicone implants were not affecting me. My ANA came back very high which started this journey! I went to a hematologist and tested positive for MTHFR and Antiphospholipid syndrome I went to a rheumatologist who said I seem healthy and have no symptoms. My bloodwork just came back that I still have high ANA 1:2800 and Positive centromere Titer. My rheumatoid factor is 17. What can be causing all of this with no symptoms at all? Should I be worried. This is a lot of information to understand. Thanks so much
  5. Hi all, I'm a 29 year old woman with diagnosed hypothyroidsm (Hashimoto's) I have a few symptoms, although I have seen many doctors they tend to ignore me. My symptoms are: -For 1 year already I have been having night sweats, got a bit better with thyroid medication -Raynaud's (diagnosed) and chilblains in cold -Numb hands and feet at night, or when I cross my legs etc -ANA came always negative but the last one was 'weak positive' with all sub tests (ana panel) negative -ESR and CRP very low I have no fatigue, joint pain, swelling or stiffness. Doctors I've seen told me not to worry about weak positive ANA but I am worried. I was wondering if those could be symptoms of Sclero? How were your test results? Anybody experiencing similar symptoms? Also what is exactly skin thickening, how does the skin look like when it's thickened. I mean the color of it, also I heard something like fingerprints wouldn't be seen anymore etc, can you please give more details? Thanks!!
  6. 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?
  7. I've had issues with my joints hurting for several years now. My primary doctor in 2008, ran an arthritis panel and they said it was negative. They went ahead and referred me to a rheumatologist though and he did various pokes and prods and said that I had fibromyalgia. This same rheumatologist refused to do an ANA on me. He said that if an arthritis panel was negative that an ANA would be negative. I finally got a doctor to run an ANA on me. I got the results today and the ANA pattern is speckled with the antibodies titer at 1:320 with flag references A and H. I'm glad that I have a little bit of info as far as my aches and pains, however, I'm really upset that the other rheumatologist I saw refused to do the ANA a year ago!
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