← Return to Limited Scleroderma or CREST Syndrome: What helps?

Discussion

Limited Scleroderma or CREST Syndrome: What helps?

Autoimmune Diseases | Last Active: Feb 17 3:52pm | Replies (89)

Comment receiving replies
@csmirat

Hello Amanda, I am so sorry you have been diagnosed with limited scleraderma. I have had it for now 23 years. I would advise you to find a good rheumatologist, a woman would be better. I have had no luck with men drs. All the symptoms you describe are a part of my life. I have learned to trust myself and know how to handle things with my doctors. I have hand picked all my doctors and finally have a team of drs rom same hospital I can trust and know they trust my instincts and my own disease. If there is anything you need to know or ask please do. I would love to give back to someone since I was helped alot. I am Also a nurse so I have alot of knowledge about disease processes

Jump to this post


Replies to "Hello Amanda, I am so sorry you have been diagnosed with limited scleraderma. I have had..."

Hello, I stumbled onto this site this morning when I was looking up some other information and was happy to see this thread. I was diagnosed by a rheumatologist after every single doctor I went to blamed my weight for all my ailments. I had the beginning symptoms of dry mouth and not being able to swallow. I was prescribed prilosec which I never took. 5 years later the rheumatologist got it right. I chose not to do steroids. My symptoms weren't too bad then. Now, another 5 years later the symptoms are getting worse. Reynauds in winter is not fun. I just turned 72 so my struggle is not knowing when a new ailment begins if it's just an "old age" thing or if it has to do with CREST. I am not a lover of doctors. I don't go to them anymore because they don't help. My rheumatologist moved and I haven't found a new one yet. In the meantime I just do the best I can. I LOVED your reply to Amanda. You told her that she could ask you anything she needed to know. That's so cool. I'd like to ask you something as it's the main thing I'm confused about. If you could simply explain the difference between LIMITED and not limited, I'd sure appreciate it. I don't know which one I've got. I've read the internet answers but there's too many details. I just want a simple answer. Thank you.