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Katlove007

Unable to get a referral to a rheumatologist

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I have just recently received blood results  of ANA 1:40(neg) and anti-scleroderma 2.4.

 

No one in my area is taking any new patients and I was told that because of the low ANA and all other blood work was okay that I’m in the wait and see category. I would love to be able just to sit down and talk to a specialist, but for now I’m told I need no referral.

 

I'm wondering if anybody else is ever been in the situation and how they proceed. 

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Hi Katlove,

 

Welcome to these forums!

 

I'm sorry to hear that you're having problems getting an appointment with a rheumatologist.  We do recommend that our members, if possible, consult a listed scleroderma expert, rather than a common or garden rheumatologist, as a complicated disease such as scleroderma does require specialist knowledge in order to deal with it correctly. It may be necessary for you to travel out of state in order to obtain an appointment with one.

 

Having said that, I'm afraid that very often the scleroderma expert/rheumatologist does recommend a policy of "wait and see", until further symptoms manifest themselves or not, as the case may be. I know this can be extremely frustrating, but unfortunately scleroderma is notoriously difficult to diagnose, especially in the early stages. For more information about your blood test results, please see our sticky.

 

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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Thank you for your response. Unfortunately at this time  finances limit me from going elsewhere maybe at a later date I’ll be able to see a specialist.  This forum has really helped with my anxiety and fear about my blood work and hopefully it does not progress for me. 

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Update:  I finally convinced a  rheumatologist to see me. I am very scared as I have had no explanation of anything to me since I got my blood work 3 months ago and am afraid of getting the worse possible news ( of course) being a single mom and I have no one to help me with my kid.  

 

I believe I have been having some symptoms and was wondering if they sound familiar. Red rash that comes and goes on my hands along with very stiff joints in my hands but then it will go away as fast as it came on. I have a lot of other orthopedic issues as well so it hard to tell if pain is from orthopedic or if it maybe something else. 

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Hi Katlove,

 

Thanks for letting us have your update.

 

I'm very pleased to hear that you've managed to obtain an appointment with rheumatologist (although a scleroderma expert would be even better! :wink:) and hopefully he will be able to advise you about your symptoms and may be able to set your mind at rest a little more.

 

The symptoms you describe could possible relate to any number of health issues, which is why a consultation with a specialist is so important.

 

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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