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Everything posted by Puja

  1. Hi Joelf and barefut, thank you for your warm welcome and thank you so much for sharing it with me. I'm sorry that you both went through the same as I'm going through.... Joelf I wanted to let you know that though I have my results normal with my PET scan, they are going to perform a biopsy on me on 8th March to see and cut lung tissue. Thank you for the link for limited and diffuse scleroderma, it was lot of help. And sure I will let you all know what my PET scan results are. Barefut does your muscle pain come and go? As I'm experiencing something like this it really hurts and if I sleep then after few minutes the pain goes away. Is that muscle pain and if not how does the pain feel for you? About the medication, did you have any side effects by taking those meds? So you are completely off medication, right? Hey guys, I'm trying not to worry; I have you guys to answer all my questions. Thank you so much, I appreciate your help and please reply.
  2. Thank you Shelley Ensz; you have been a great help.... I just went to the scleroderma and pregnancy there is lot of information....I appreciate your help. I actually don't know what kind of scleroderma I have, as they are yet doing the findings. I just wanted to know if any of them have low volume in scleroderma with hazy markings, does it mean I have diffuse scleroderma or limited? As my skin doesn't get tight or I have any visible symptoms, it will be a great help if I get to know.
  3. 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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