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Beckyinva

Do doctors want to treat this?

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I recently was ordered blood test by an orthopedic doctor. He said I have high numbers for systemic sclerosis. He is referring me to a rheumatologist. I am on my 3rd rheumatoid doctor trying just to get an appointment. This 3rd one has had my paperwork for a week and I can’t even get them to call to make my first appointment.   

 

I feel anxious to get to a doctor to get info. There are no specialists in my area. 

 

So my question is, is it difficult to find doctors who treat this? Thanks.

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Hi Becky,

 

Welcome to these forums!

 

In answer to your query, scleroderma is a complex and difficult to diagnose disease and there are only a few specialists who have the knowledge and expertise to deal with it. I've included a link to our listed scleroderma experts.

 

Regarding your problem of actually getting an appointment with one, I can only suggest that you will have to be very persistent.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Becky,

 

I am sorry to hear you are having a hard time. My best advice is to not give up on finding someone to see you. I have had this same problem where I am at. I was told because I didn’t  show the clinical signs that they would not see me. It took calling several offices before finding one that would just sit down with me and explain what was going on.  I have been back since I started having other skin issues come up and I am still in the wait and see, as I am not showing the classic signs. I am waiting to get different insurance in order to go to one of the recommended specialist on here.

 

I am lucky enough that I have actually made contact with someone who has scleroderma in my area and was told that the doctor in Denver was leaving and that the clinic in Arizona is taking new patients again. It has been very helpful finding someone to talk to face to face with. All the advice on here is very helpful. I have been my own advocate and looking into the tests that need to be done and have asked my primary care doctor who has been willing to get the tests done and everything so far has come back okay.  Although some of the tests are not available either.

 

It can take a long time to get a diagnosis and that has been the hardest part so far. Hugs. Hang in there and don’t give up. I hope this helps you some. 

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