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Found 4 results

  1. Hi, I am new here and I am from Greece. My English is not very good. My story with all that stuff began in 2006, with a Raynaud's attack. I was on vacation in a beach and I was swimming. This has repeated many times since then. I searched in Google and found about autoimmune diseases. I went to a rheumatologist, who ran blood tests with confused results. I have visited 4 rheumatologists until now. I have telangiectasia for 30 years. I am 51 now. I have some problems with my heart. Two days ago, I visited my cardiologist and he found 40mmHg pulmonary pressure. My world collapsed. I am stressed all my life but now I feel depressed. I would appreciate any help.
  2. Hello all, we got the call today that we have been dreading. Our 13 yr old daughter was referred to a pediatric rheumatologist by her primary doctor. I took her in because she’s been experiencing terrible shoulder and knee pain all summer. I have RA so I was afraid she might have the pediatric form of it starting. She was negative for rheumatoid factor but positive for ANA and ACA. The rheumatologist confirmed the findings and said she has CREST. Of course I’m devastated and perhaps I’m grasping at straws but she has no CREST symptoms at all. Her only symptoms to this day are extremely painful shoulders and knees. What are your thoughts on this?
  3. Hello everyone, I made a post a few days ago about my little sister getting Raynaud's and ANA positive 1:2560 (are there healthy peoples with that high of a titer?) with no other symptoms and Raynaud's Phenomenon running in our family. My doctor talked about scleroderma but was not that worried and no appointment to any rheumatologist was planned, which is bothering me. I tried to do what very lovely peoples told me here, to keep calm and all, so thanks for your help. I was just wondering if little injuries on toes usually appear with Raynaud's Phenomenon? Also, her toes never appear to go back to normal. Her little cuts aren't painful at all.A new appointment is planned in 3 months. Also, I read that Raynaud's diagnosed at that early age is way more likely to be primary, is that true? Thanks for your help. Have a great day.
  4. Hi Friends, It all started with my finger getting blue didn't take this seriously as I kept my self warm it was all good. I come from a warmer climate and as I got married I came down to Los Angeles. My blue fingers started getting blue even more day by day. My parents where more worried and asked me to show doctor as its not normal to have blue fingers. I googled and it said keep yourself warm and this happens to lot of women, known as "Raynauds phenomenon". I was not that serious for 5 years and then once it happened that I had to visit my parents and they forced me to see a doctor and my doctor scared the daylights out of me and asked me how you can be ignorant, you need to show a rheumatologist. They gave me lot of blood work and I got my reports and the rheumatologist told me that I have scleroderma, I am positive for Scl-70 and he told tme here is no cure and no one knows how it comes. As I live now in Los Angeles he asked me to meet doctors here as I have to be under cure every three months, I have to see doctor. So I was not clear with what happens? How everything will be? What is causing it and will I have babies? These things where bothering me a lot. As I came to Los Angeles the first thing that I did was get insurance in Kaiser Permanente and then got my appointment with a rheumatologist and she asked me to get blood work, echocardiogram, and pulmonary test. With my 1) blood work everything was good, my kidneys, liver, etc. were all good 2) echocardiogram was all good too 3) pulmonary test showed moderate restrictive lung disease which is consistent with scleroderma and asked me to get CT scan of lungs and scan of the thoracic. They did find something like low lung volumes. Hazy markings in the posterior lung bases most likely atelectasis and 1.5 nonspecific anterior mediastinal soft tissue nodule, residual thymus tissue. I really didn't understand anything that they said. So when I met my doctor she told me to meet a "lung specialist" so she discussed the whole report and ask me if I was a premature baby I told her no and she told me we can do one thing, lets get a pulmonary test done again and we should get even a sniff scan. The pulmonary test should be done every three months so we get to know what happening. So I got my reports and there were all the same. She asked me to get it done after three months and when I got them done the results where very bad so she asked me to get one more CT scan done. This time they found something increasing and she asked me to meet a surgeon. When I meet the surgeon he scared me; he was worried about the increase which seems like a "tumor" and asked me to get more tests done: CT scan with contrast and PET scan. I got my CT scan with contrast; then the surgeon told me that they don't see the tumor or anything, it has disappeared, and he said someone is really looking out for you because everything looks good and we need to wait for PET scan so we will have a clear picture of what it is. I have done my PET scan and I'm waiting to meet my doctor. I'm going to meet him on the 6th Feb 2013. Well if everything is all right I will have to have a biopsy operation on the 8th March 2013, to see what are the hazy markings I have on my lungs because those also are increased from past scans. I'm really scared to what is happening. There is no clear picture too what will effect first and it's a little frustrating. As I had planned to have baby by now as I finish 6 years of marriage. I can't even be on tablets as I need to have baby. Please let me know if anyone is going through this same disease as I'm going. I know everything will be okay. I just need a support of friends who is going through same as I am.
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