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miremi

How to talk to your Rheumatologist?

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Hi everyone,

 

I started out in dermatology getting biopsies for my hands because of how they were getting.

 

My dermatologist has sent me to a Rheumatologist to be tested for RA and ordered tests ahead of time..most of it came back okay but the ANA came back positive in a nucleolar pattern. 

 

Of course, me being me, wondered what that meant and off I went to cyberland and found Scleroderma. I read some of the symptoms and of course; it made me nervous.

 

Women age 40-50

Infertility

GERD  (under GI care)

Dysphagia

 

I sort of stopped looking at things at that point because I have not seen the Rheumatologist yet. That happens this Tuesday and I am not sure what questions I should ask?  I do not want to be diagnosed with this; but also don't want someone blowing me off because the rest of my labs were normal.

 

How should I talk with my Rheumatologist about autoimmune disease so we are both on the same page and understanding what type of care or testing (if any) I should have?

 

Please share your experiences. Thank you.

 

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Hi Miremi,

 

Welcome to these forums!

 

Whilst I can understand that you're worried and concerned by your health problems, the symptoms you describe could relate to any amount of diseases and although there could be a possibility of scleroderma or other autoimmune problems, equally they could relate to something completely unconnected. Unfortunately Googling your symptoms and then panicking will not improve the situation (been there - done that! :wink:) and a complex disease such as scleroderma is notoriously difficult to diagnose and not something that can casually be determined by putting a few symptoms into an internet search.  I believe the average time for a diagnosis to be made is six years. Also a positive blood test does not mean that you will develop the full blown disease as it is quite possible to have positive antibodies and yet never suffer with any more symptoms. The reverse is also true. 

 

I would therefore suggest that you make a note of all your symptoms and the length of time that you've had them and then present them to your rheumatologist at your appointment, with a view to undergoing any more tests that he might consider necessary. I've included a link to our medical page Preparing for Doctor Appointments, which I hope will be of help to you.

 

Kind regards,


Jo Frowde

ISN Board Member

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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