I just wonder? Looking for Scleroderma specialist.

3 posts in this topic

I am just wondering if my rheumatologist really knows what he is doing with scleroderma. I've been going to see him for the last 4 months; he does blood tests; looks at my hands and face and says "you're doing good and I am not going to change any of your medications". For some reason I just don't trust his judgement.


I am looking for a scleroderma specialist  close to where I live; it seems the closest is Minnesota. I think he is at the Mayo Clinic but that would be a long trip for me to go see him and gas is very expensive right now and I am not sure if my medicaid would cover it, although I know the medicare part would. I am seeing my General Practitioner tomorrow after noon and will talk to her further about it.



         Thanks, quiltfairy  

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Hi Quiltfairy,


I do agree that it really would be beneficial for you to be dealt with by a Scleroderma expert. Scleroderma is such a complex disease, which does require specialised treatment by someone who is aware of it's little idiosyncrasies and it is so much better if you can see someone in whom you can have confidence.


I've given you the link to  University of Minnesota Physicians and it does appear that this centre accepts Medicare and Medicaid, as well as many other types of insurance.


Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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What did your general practitioner say?


PS, certain blood tests reveal how well many of your organs are functioning and others for inflammation etc.  So I am hoping that what is what your doctor is looking at.  Though you still need baseline lung and heart testing if you are systemic.


Good luck, let us know

Diffuse Scleroderma Diagnosed March 2009

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