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rainbow

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About rainbow

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  1. Hi eastcoastmom! I am a 37 years old mom from Norway and I am in the same boat as you! High anti-centromere, but zero sympthoms. I have had high levels since 2008 (9 years), and still not having an symptoms at all. My doctor says I'll likely never develop CREST, since I've lived with the antibodies for so long without being affected. Some people are ANA-positive for just no reason at all. Please let me know if you're still in here.
  2. Hi! As you know I am new here.. and aksing a lot of questions. This time I wonder about the loss of muscle control of the Esophagus, which can cause difficulty swallowing. Are there any medications to help this? Can they stop it or give you the ability to swallow back? Or is the function gone for ever if it's gone? Can anyone tell about their experiences with this exact problem? Thanks, and have a nice weekend!
  3. Hi! Have any of you experienced that scleroderma/Crest started during a pregnancy/after giving birth. I want to have another child, and the reumatologist told me I could with no risk. But I have read in here that for some of you it all started with a pregnancy. Since I have the anti-centromere in my blood (but still no symptoms of sclero.), I don't want to take a risk of starting Crest by getting pregnant.. But the rheumatologist said there was no statistics about this.. He would not advice me to give up having another child. What are your experiences?
  4. Hi! I have talked to the Reumatologist again now, because he was so kind to call me to answer all my questions. This is what he told me - perhaps it can be usefull for others too: What are the prognoses with CREST? - Good. It is slowly progressing. In your case, where you don't have any symptoms yet, the prognoses are especially good - if you have the Crest at all. The Raynauds is present in over 90% of the cases, and remember that you don't have that. The most serious thing with Crest is lung/heart-involvement. How often is the lung/heart involved in Crest? - In 10-15% of the cases. I am afraid of dying if I get Crest! - You don't have to be! You are absolutely not dying! The only thing happening if you get Crest, is that you will be controlled from time to time, and your local hospital is good at it. So this is some of the things he told me.. and it was good to hear. The fact that just 10-15 % of the Crest-patients have lung/heart-involvement means that even if I have Crest there's a 85-90% chance it won't kill me. Am I right? And there is one ting I would like to ask you: Have any of you experienced that scleroderma/Crest started during a pregnancy/after giving birth. I want to have another child, and the reumatologist told me I could with no risk. But I have read in here that for some of you it all started with a pregnancy. Since I have the anti-centromere in my blood, I don't want to take a risk of starting Crest by getting pregnant.. But the rheumatologist said there was now statistics about this..
  5. Thank you for your answer! What worries me the most is that I am just 28 years old.. and many symptoms can show ut before I am 40.... What will the future bring? Do I get to have grandchildren? Do I get to grow old with my husband? It would be better to get the diagnose at 50, and then be able to live a normally long life.... But as I said I don't hva a diagnose yet... and hopefully won't get. It's just that the anti-centromere result has made me depresses by thinking about what MIGHT happen. The stories that I read about Crest scares me..
  6. Hei! Does anyone know what the prognoses are with Crest? I guess this is different from person to person. But is it possible to say something in general? Does it usually shorten your life, og can you die old WITH Crest and not FROM Crest? I hope so! Trying to find some comfort here, because I am worried about the future.... What does a person with Crest die from, if he dies from the illness? Are there no medication to stop the fatal developent of Crest? I don't have one single symtom of Crest... I have just found out that I have anti-centromere antibodies, and that's all. I hope I will have a long and good life, av hopefully never develop Crest. Are there any chance the blood test can turn negative if I take a new one in a while? I am thankfull for any answer...
  7. Thank you for your answer! I don't think I have a low level of ANA. It says in the answer that I have anti-centromere - 6. I don't know what the "6" means.. Do you? I guess it's a high level.. if 0 or 1 is the normal? What bothers me is that this blood test result will make me go and look for symptoms all the time, and never allow my mind to rest for the thought of perhaps having scleroderma. Is it true that CREST has bether prognoses than the systemic scleroderma? What are the prognoses with CREST - is it usually fatal, og can you get old with it? It would be nice if people out dere living with CREST could tell me a little about what their life is like... Perhaps it will make me less frightened.... Thanx! :)
  8. Hi! I am new in here. I am a girl from Norway, 28 years old and have a son that is 2 years old. I went to see my doctor a while ago, because I was tired and dizzy and did not know what was going on. (By the way.. sorry if I can't spell everything right!) The doctor ordered all kinds of blood tests, just to be sure - including antibodies. When it came back, I had tested positive for anti-centromere antibodies, and the doctor told me this was most often seen with limited scerloderma. I went home and started reading about it on the internet - and it really freaked me out! I got SO scared! The doctor sent me to see a rheumathologist, and I have just been to see him now. He had ordered x-rays both of may hands and my lungs and heart beforehand, and lots of extra blood test. When I came there he looked at and felt my skin, and asked me a lot of questions. His conclusion was that I don't have any sign or symptom of CREST or any other rheumatic illness. Which was a good answer to get in itself. But no my mind is confused. Why do I have the anti-centromere antibodies then? Could it be that I am about to develop CREST, but haven't had any symptoms yet? Or can anti-centromere be an indication of something else? My head is full of questions.. and the Rheumathologist couldn't give me any comforting answers. I asked him: "What is the chances I will get CREST? Can the antibodies mean something else?".. he didn't know. So as far as I understand, I'll have to live with this unsureness for the rest of my life... Or.. can anyone out there give me some answers to these question? Can a healthy person have anti-centromere, without ever getting CREST? I hope so... I am scared, because I am young and have a beautiful little son to look after! I can mention that I have never had Raynaud's.. and I understand that this is a very common symptom. The rheumatologist said that some can have this for 10 years before they get any more symptoms. It comforts me a little bit that I don't have this... Thank you for reading, and I hope someone can answer me :rolleyes:
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