CREST Syndrome

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/1/2009 6:04 PM (GMT -6)   
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
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/1/2009 7:55 PM (GMT -6)   
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!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/1/2009 8:11 PM (GMT -6)   
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
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, October 24, 2014 11:48 AM (GMT -6)
There are a total of 2,250,321 posts in 250,324 threads.
View Active Threads


Who's Online
This forum has 157512 registered members. Please welcome our newest member, EW.
433 Guest(s), 13 Registered Member(s) are currently online.  Details
bekay, LymePickle, Ari Bema, opugirl, getting by, rosieginger, keaz, paulroy, AZYooper, Garden Peace, ColitisGrl, mauihawaii, Cornell


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer