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CREST Syndrome

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Posted 4/1/2009 11:04 PM (GMT 0)
Does anyone know anything about CREST syndrome?

Just saw my Dr. yesterday to review my most recent round of labs . . . he looked at them and said "you need to see the rheumatologist . . . now". He said I may be exhibiting symptoms of CREST syndrome and wants some firm answers. Apparently the whole "positive cytoplasmic staining" along with positives of other antibodies are indicative of this?

Now I just play the waiting game to get in to the rheumy - it takes a minimum of a week for them just to schedule an appointment and can take up to a month to 6 weeks to get in.

Just wondering if anyone here has dealt with this. I hate waiting :(

Anne

Posted 4/2/2009 12:55 AM (GMT 0)
Hi Anne, So sorry you haven't been referred to a rheumy before now. It is actually a GOOD thing that you will be seeing one. They are the right player to figure out all the details. 6 weeks is actually a short wait. Some of us had to wait several months to see a good rheumy. One thing you can do is call the rheumy's office after your appointment is made and ask to be put on a cancellation list. Let them know that you will make yourself available even last minute. Sometimes you can get in sooner that way. Here is a link to the Scleroderma site.   http://sclero.org/support/stories/english/d/deborah-m/a-to-z.html     That should be helpful in looking for information about CREST. Blessings!
Posted 4/2/2009 1:11 AM (GMT 0)
Hi Rosie,

My pcp specializes in internal medicine & immunology, so he usually doesn't refer me unless it is something he is not comfortable handling. The one nice thing with my pcp is that he treats the "whole person" and he is very particular about the referrals he makes. My doctor has "blacklisted" the one I saw previously because the guy has a habit of dismissing you if you do not "look sick". And I have already called the rheumy's office and asked to be put on a cancel list - my schedule is really flexible, so I am hoping I can get in a little sooner that way.

Thank you for the link. I will check it out :)

Anne
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