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Newly diagnosed!

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#1 Sandi1967



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Posted 11 February 2016 - 09:29 PM

I was diagnosed by my rheumatologist last year (I've had RA since age 26, I'm now 48). I'm having symptoms that seem troublesome to me but he is not very concerned. I went to my primary care physician yesterday and he says he doesn't think I have scleroderma at all! He's not an expert in the disease so I'm afraid to trust his judgement.


I know it's not normal to have painful heartburn even after taking a prescription, plus chewing and drinking antacids; can't swallow stuff, chest pain, can't take a deep breath, and other less terrifying symptoms. I don't know what to do at this point.


Has anyone else had problems with a doctor like this? What now?

#2 Joelf


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Posted 12 February 2016 - 03:48 AM

Hi Sandi,


Welcome to these forums!


I'm sorry to hear that you're experiencing worrying symptoms. As scleroderma is such a complex disease, we do recommend that our members consult a listed scleroderma expert, as many rheumatologists and primary care doctors do not have the knowledge and expertise to deal with it.


Kind regards,

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#3 miocean


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Posted 12 February 2016 - 05:49 AM

I had the same issue when I was looking for a diagnosis. I had two doctors say they thought it was scleroderma but my GP said he didn't think so. I finally received a diagnosis by a rheumatologist who referred me to a scleroderma specialist. This was over a 6 month time period and shortly after I was in renal failure.

Please try to see a specialist.
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#4 Sweet


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Posted 12 February 2016 - 07:20 AM

Hi Sandi!


Welcome to our family.  All of this can be so confusing, and the link that Jo gave can help you to find a doc that is an expert in this field. It can make all the difference. So please find one close to you and make an appointment. 


Looking to hearing updates!

Warm and gentle hugs,

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#5 Choclit


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Posted 26 February 2016 - 03:12 AM

The key to an accurate diagnosis is to have correct ANA and antibody testing done as a first step.  Since ANA testing is often done by methods that have a high false positive error rate with scleroderma patients, even this can be a problem.  Do you know if you have a positive ANA test and antibody identified yet?


Here is a link to an article I did on ANA and antibody testing that explains all of this: http://sclerodermain...-Article-US.pdf.

Ed Harris
Scleroderma Education Project
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(Only SWA members may post links to their own site in forums posts)

#6 Shelley Ensz

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Posted 02 March 2016 - 09:41 AM

Hi Sandi,


If your rheumatologist says you have scleroderma, and you have no reason to disagree with it, but your primary care doctor disagrees....then you need a new primary care doctor, pronto, as they could actually be hazardous to your health, not to mention your sanity. 


When you establish care with a new doctor, be sure to bring records from your rheumatologist, so they aren't just taking your word for it.


Please keep us posted on how things are going for you.



Warm Hugs,

Shelley Ensz
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#7 Amanda Thorpe

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Posted 10 March 2016 - 01:03 PM

Hello Sandi

Welcome. You may find it helpful to browse our videos, especially those about diagnosis. Achieving it can be gruelling because doctors inexperienced with the disease can get hung up on blood test results.

Diagnosis is best made based on clinical exam, physical symptoms and medical history. Blood work can help support diagnosis as well as help categorise the type of scleroderma. As it is possible to have scleroderma with negative blood work and positive blood work without having scleroderma, it's crucial diagnosis not be made or ruled out purely on the basis of it. In addition, I know that labs can make mistakes or read the results differently from one another.

I have rapidly progressive diffuse scleroderma but until 2014 my ANA was always negative and my SCL-70 still is, I was diagnosed in 2007. My rheumatoid factor has always been in the normal ranges as well.

Had I been diagnosed on the basis of blood work, I would have died long before my ANA became positive and I am under a scleroderma specialist so I know that all my blood tests have been accurate.

I hope this helps and take care.
Amanda Thorpe
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