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dazed and confused

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My pulmonologist tells me that I have scleroderma because my blood tests are positive for scleroderma, I also have opportunistic lung infections and lung changes on MRI and CAT scan. I feel I have many other symptoms of scleroderma, such as blanching and blueing of fingertips. The rheumatologist says he isn't sure that scleroderma is causing my problems. I want to know what's going on, but I feel I am being treated well. How can I get more information?

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Hello Dazed & Confused

 

Welcome to the forum!

 

Firstly the colour changes in your fingers sounds more likeRaynaud's Phenomenon which can accompany scleroderma and other autoimmune disorders. Raynaud's is an extreme spasm of the blood vessels in response to cold or stress. It's important for you to keep your hands warm and feet if they're effected because secondary Raynaud's (or Phenomenon)can result in digital ulcers.

 

In primary Raynaud's, the blood vessels return to normal afterwards. However, in Raynaud's with Scleroderma there may be blood vessel scarring which can make medication ineffective. Digital (Finger) Ulcers are caused by the lack of oxygen to skin cells.

 

To be referred to a rheumatologist you presumably had symptoms of some rheumatic disorder, what does your rhematologist think it is if not scleroderma?

 

You could alway ask for referral to a scleroderma expert for the definitive answer. They're best placed to interpret your symtoms and begin any treatment plan.

 

I hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Dazed,

 

Welcome to Sclero Forums! I'm sorry it is because of concerns about scleroderma, but I'm also glad you found us.

 

It sounds like you might have telling symptoms of scleroderma. If I were you, I think I'd ask my pulmonologist for referral to another rheumatologist -- and, most preferably, a scleroderma expert.

 

Is that anything you'd consider doing?


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.

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Hi Dazed and Confused,

 

Welcome to the Forum. I'm sorry your specialists are at odds with each other. That's got to be pretty unnerving for you.

 

I also would ask to see another rheumatologist. Without meaning to be critical, I can tell you that they are not all suited to diagnose or treat scleroderma. It is such a rare disease that unless a doctor specializes in scleroderma, he is unlikely to have much experience with the disease.

 

Best wishes, and again, welcome!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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