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Everything posted by aridge

  1. Shelley, She is so happy and so excited, especially when he said he saw no reason whatsoever that she couldn't get pregnant and carry a baby. Of course, she could doubt what doctor. Wigley told her and wonder what if the first doctor was right and he is wrong, but doctor. Wigley is the Associate Director of Rhematology and the Director of scleroderma at John Hopkins, which is the #1 Rhematology Center in the US, so for now...she is trusting that doctor. Wigley was right and he was so confident that she didn't have scleroderma and felt she only had a 20% chance of ever developing it. He did say that he thought the morning stiffness, fatigue, joint pains, etc. was definitely a connective tissue autoimmune disease, but did not feel it was severe. He said he could have prescribed medication to help with her symptoms, but didn't want to do that since she was trying to get pregnant. If any of you have not seen doctor. Wigley, I would encourage you to do so. He was SO THOROUGH and so nice. If my sister had not seen him, she would have taken the first doctors diagnosis, put off trying to get pregnant, and spent every day of her life thinking she has a disease that she doesn't (or at least hopefully does not.) She goes back in 6 months...I will keep all of you posted. And FYI....I own an insurance agency and I just submitted a request to the company to donate $500 to scleroderma research : ) Bless you! Amy
  2. Well we just got back from John Hopkins and my sister got great news. Dr. Wigley spent over an hour looking at her skin, nailfolds, hands, feet, etc. and even though she has a positive ANA, positive Scl-70, GERD, Barret's esophagus, fatigue, joint pain, dry eyes, and had an abnormal PFT (PFT at JH came back normal...previous DLCO was low) and morning stiffness, he does not feel it is scleroderma. He thinks her Scl-70 was a false positive and that she has a non-specific mild connective tissue autoimmune disease. He went on to say that he felt she was a perfectly healthy 30 year old. He did say in his studies there was a 20% chance that her disease could become a "named" autoimmune disease such as lupus, rheumatoid arthritis, or scleroderma. But at this time, because of the absence of Raynaud's (which another rhematologist said she had--but Dr. Wigley felt she did not), and skin issues said scleroderma could not be diagnosed. So for any of you on this site looking for hope that you don't have scleroderma...please have some. I never thought of getting this great of news and we did. Dr. Wigley, who I feel is the expert on scleroderma, said that more recently they are seeing a lot of false positive Scl-70 tests and that a positive ANA could simply be because a family member at some point had an autoimmune disease. And for those of you with Scleroderma...my thoughts will remain with you. I feel VERY confident that Johns Hopkins and Dr. Wigley will find a cure for this disease. They are working so hard towards this and I think they will get there. I am going to start donating money to this cause and think everyone should get as many people as they can to do the same. Bless you all! Amy
  3. Thank you all for your responses. One thing I am definitely finding is that there is no norm with scleroderma...everyone's symptoms, prognosis and quality of life seems to be different. I just be thinking of each and every one of you that they find a cure for this terrible disease. I will keep you posted as to what the doctor at John Hopkins says next Monday. Oh and one more thing. I want to get involved in any scleroderma fundraising events. Have a wonderful weekend! Amy
  4. Thank you for your reply Janey. What symptoms do you have? And does anyone in your family have autoimmune diseases. Also, since she does have an SCL-70 antibody and had the spirometry tests (coupled with the joint pains that took her to the doctor in the first place)...would your gut feeling telling you that she does in fact have scleroderma and that it is the more serious diffused form? Blessings Amy
  5. Hello! Last year my sister received a positive ANA after seeing a doctor for fatigue and severe joint pains in her toe, foot and wrist. At a recent follow up with a rheumatologist he ran more detailed blood work and it came back with a positive SCL-70 antibody, so he diagnosed her with Scleroderma. From there she went to a cardiologist, gastroenterologist and pulmonologist (echo on heart was normal), but the spirometry test done by the pulmonologist found that she had a 64% dclo and 74% total lung capacity, which suggested she already has mild lung involvement or mild restrictive lung disease. She was a smoker and quit the day she found out about this. Could the smoking have caused the lung tests to be off?? And she has GERD disease (acid reflux) and inflammation in the stomach. We have an appt at the Scleroderma unit at John Hopkins on June 22nd. But in the meantime, can anyone with Scleroderma give some insight and prognosis. She is only 30 years old and is in the midst of trying to get pregnant...her rheumatologist told her that he didn't see any reason why she couldn't get pregnant, but I am reading a lot of contradiction online. Also, she really doesn't seem to have the symptoms of scleroderma...her skin looks fine, she doesn't seem to have Raynaud's (fingers and toes don't turn colors). If it is Scleroderma and already affecting her lungs....is this bad. No sugar coating..I would like some direct answers. My next concern is that my husband has Crohn's, his uncle has rheumatoid arthritis, my sister has now been diagnosed with Scleroderma, my aunt had autoimmune hepatitis...with all these autoimmune diseases on BOTH sides...are my children at a greatly increased risk of developing an autoimmune disease? They are 3 and 18 months and this scares me to death! Any insight would be much appreciated. Bless each and everyone of you that deals with this disease or any autoimmune disease. I'll be hoping for a cure!
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