ginny

Tangelo

4 posts in this topic

tangelo I was told you might be able to help me. i am having horrible problems and am searching for a dr. that deals with sclerodoma or other rare autoimmune diseases here in colorado. i am getting sicker and sicker with stomach esophogus bladder leg pain fluid on the knees raynouds the list goes on and on and I am only 40 years old. if you think you could help me I could give you more details about my health but 2 doctors have brought up the crest syndrome or diffuse systemic sclerosis I am at a loss in and out of the hospital I hurt so bad and cannot hold down food. i am really getting scared and I can't find help. if you could point me in the right direction I would be so greatful. I am even willing to travel I hear some of the rare disease clinics or hospital may help but I am not sure where to turn to. I also have a little sister (32) who is going through almost the exact same thing. with both have ptosis of the eyes and think that may have something to do with it. well I mad a real long story short and if you feel like writing me I sure would appreciate any help you could give me. Thankyou so much Ginny take care and thankyou again

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Ginny,

I'm so sorry you are having so many problems. You definitely need to find a good doctor to help you out and get you stabilized. Tangelo has really kept close with her doctors and has some good ones, so she'll be of great assistance. I know she uses one of the following centers so she'll be able to provide personal experience. Here are some centers I found in Colorado that are listed under Scleroderma Clinical Trail Consortium.

 

Also here is a directory of Rheumatologists in Colorado. Just click on the city that you are in or closet to.

 

Please keep us up on how you are doing. I hope you find a wonderful doctor soon.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Ginny- There is a fantastic clinic in Colorado that is first rate in auto immune- National Jewish- I think in Denver. Shirl.

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