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More Info. About "pure" Crest Anywhere?


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#1 LanaJae

LanaJae

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Posted 10 December 2007 - 11:35 AM

To make a very long story somewhat short, I developed an autoimmune disease called gestational pemphigoid 7+ years ago. It's a blistering disease where the protein is being destroyed that holds my skin on. I've never had a remission from this despite every available medication option and treatment such as IVIG.

About 2 years ago, I suddenly started episodes of not being able to swallow. At this time, I already had Secondary Raynaud's Phenomenon.

I've spent the better part of two years trying to figure out what is causing my inability to swallow. It's very frightening and it can happen at any time - my swallowing just stops, and often I cannot breath in through my mouth at the same time. There is no obstruction, I've had esophagus biopsies, etc.

I'm thinking maybe I have pure CREST, but this is the only site that describes it. I'd like to find some additional information and bring it with to my next doctor appt.

I am being helped now with Decadron - I take Decadron for 6 days and then the swallowing problems quit for about 2 weeks. The only explanation my doctor has for this is that it must reducing inflammation. Because of how paranoid everyone is about Decadron, I am continually told to put off starting the next pulse, so basically I have 2 good weeks out of every 4.

I've also started to develop tightening in what I describe as the arteries in my neck, but no one has investigated that. I don't know if that is related to the swallowing/Raynaud's.

I'm 43, female, live in Minnesota (am a patient at both the University of MN and Mayo Clinic for the blistering autoimmune disease).

Thanks for any insight/information anyone might be able to provide.