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My Doctor is sure I have CREST

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#1 Gizelle


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Posted 09 May 2008 - 01:58 PM

Hi everyone. It has been a long time since I've posted anything. I was sent to a Dermatologist last week and he is sure I have Crest. He is going to see all my blood work and then see me again in a couple of weeks. He said I do have skin thickness on my arms to my elbows. He said that my fingers are showing a little Sclerodactly. I'm not sure how I feel about it. I'm certainly no surprised because my Rummie did suspect Scleroderma. I guess I'll have to educate myself on Crest. My general practitioner had to put me on pain medication for all the pain I feel, every where. I also have a lot of nerve entrapments. I'll let you all know how I do in my next visit to my Dermatologist. Thanks for listening. Gizelle

#2 Shelley Ensz

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Posted 09 May 2008 - 02:28 PM

Hi Gizelle,

I'm glad you are getting more answers. Although I have no medical training at all, it sounds to me like you (or should I say "they"?) are really trying to refer to systemic sclerosis -- either Limited or Diffuse Scleroderma.

Usually, they say that "Limited" systemic scleroderma means that the skin involvement (if any) is limited to the hands or face (but there is no limit on the amount of internal organ involvement that can occur.) Whereas, "Diffuse" is usually defined as skin involvement (if any) above the wrists or elsewhere on the body, and again, no limitation on the amount of internal organ involvement that may occur. (See Types of Scleroderma)

The main researchers tried to quit using the CREST term years ago, but it has dug its roots rather deep in that it is an easy term to recall, so many doctors remember it and thus it has still stayed in use. But the researchers became perturbed, because doctors would just diagnose CREST and fail to categorize it properly as Limited or Diffuse; and in many cases, not even realize that it was systemic scleroderma. Then they wouldn't even look further or screen for additional symptoms.

So try to clarify it with them at your next visit. Or, better yet, hie thee to a scleroderma expert!!

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 janey


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Posted 12 May 2008 - 03:02 AM

Been wondering where you were. Thanks for the update. I'm glad your doctor is still working toward a diagnosis. You've been dealing with this for so long, I'm sure it's frustrating. The main thing right now is to relieve the pain. I hope the meds work for you. Since you are showing skin thickening it's probably time to see a scleroderma specialist as Shelley mentioned. If the diagnosis is systemic scleroderma (where skin thickening is found), you'll need more than a dermatologist. In fact, your rhummie or better yet a specialist should become your primary physician. So if you're dermatologist does say CREST, please continue to pursue a more specific diagnosis through a specialist.

Let us know what you hear at your next appointment.

Big Hugs,
Janey Willis
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#4 Snowbird


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Posted 12 May 2008 - 09:07 AM

Hi Gizelle

I'm with the others....hope you get a Sclero Specialist/Rheumy to help you further.
Sending good wishes your way!