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Clementine

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About Clementine

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  1. Thank you! I vaguely remember discussing it with him and I’m pretty sure it was because my ECHO was good and it was a better indicator. Dr Fischer told me there wasn’t a sclero expert at UC Health now. I did see a Dr is taking sclero patients though. Now National Jewish is a center again. I wish I knew whether the sclero Dr there was really good or not.
  2. Hey! I haven’t posted here in so long. I have systemic sine sclerosis with ILD. I have gone to Dr Fischer since 2005 and am currently looking for a new DR which has me studying all my records. In 2017 I had an ECHO and CT scan. The CT scan finding says I have a dilated pulmonary artery of 35. My echo on the same day was unremarkable. I do remember discussing this dilation with Dr Fischer and he was not concerned. My memory is terrible and I don’t remember why he wasn’t concerned. Can anyone shed light why he wouldn’t be worried? I trust him fully but I’m not gonna lie, I’m concerned. I am stable and have been for for several years. I just have slight progression in the lungs. Thanks!
  3. Dr Fischer was my long time Dr. I was bummed that he was changing careers. Have you found a new Dr? Is National Jewish a new center? I thought it wasn’t when Dr F left and went to UC Health a few years ago but it appears it’s a center again.
  4. I took them together for 12 years and am fine. It’s OK❤️
  5. I do have systemic sine scleroderma, Sjogren’s and ILD. I don’t recall being so low and I have had a lot of labs. I always thought our WBC was elevated with autoimmune diseases. I’m going to check out the link. I can ask my dr but the appt is a month away and I am curious.
  6. I just had labs and my lymphocytes are really low. Is this common with scleroderma?
  7. My lips are smaller and I have sine scleroderma. Several doctors have noticed but I really don’t know if it is due to ageing or scleroderma. Dentist comment that my mouth is small and recently my GI Dr mentioned the mouth puckering up.
  8. I met with a GI Dr yesterday and I don't think I am getting either procedure. I feel terrible everyday and it's GI related but I'm trying to get better with Nexium and xifaxin.
  9. How often do you all get upper endoscopies and or colonoscopies? I know after age 50 a lot of people get the latter, but for scleroderma purposes how often does your Dr ask you to get them? I'm way over due on both and really don't want to get either. I've had them and don't think they are a big deal but I just don't want the expense or to deal with it but I know I should.
  10. Thank you! I really think it's nothing since my ECHO was normal. I just worry like crazy and it's been two years since I've had one. Hopefully I won't need the right heart catheterization. I've had one and feel they are a piece of cake, but time and money. If anyone else has anything to add, please do so. I don't like having it dilated and assume it could be worse now. Thanks. ❤️
  11. Hi All! My last CT scan shows a dilated pulmonary artery. In 2005 it was 30mm and in 2015 it was 35mm. At the time I also had an ECHO which was unremarkable. I am preparing for an upcoming appointment, with the same tests, and wanted to see what you all think. How concerned should I be? I have systemic sine sclerosis with ILD. Thank you.
  12. Has anyone else had nerve damage from having their labs drawn? Last week the phlebotomist hit a nerve while attempting to draw blood and now I have painful symptoms of nerve damage. I'm seeing a neurologist in a few weeks. I guess this could be classified as a complication of scleroderma ;). I just hope the nerve heals.
  13. Hello All, It's been forever since I have been on here! I've missed everyone. I have systemic sine sclerosis with interstitial lung disease (ILD) and secondary Sjogren's. I have been having pain in my esophagus for years now. It is a dull, constant pain and it is really affecting my well being. Do you think this is ILD related or GERD related? It is not heartburn but maybe it is the fact that my esophagus is a little abnormal. It hurts when I breathe and did I mention I am so fatigued? Can anyone relate and offer any insight? I want the pain to go away! Are there pain medications for this or do we just live with it? I am still on Cellcept and am assuming I am still stable. I go to see my rheumatologist next week for pulmonary function tests (PFTs) and an ECHO. I have an upper endoscopy coming up as well. Thanks, Jennifer
  14. I am positive antibody th/to. I just read that this antibody has a poor prognosis along with severe lung disease. No surprise about the severe lung disease, but has anyone else read that it has a poor prognosis? Four years of research and this is the first time I have read this. Thanks, Clem
  15. Hello, Does anyone have livedo reticularis, primary or secondary? If so, would you mind messaging me? Clem
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