obxbound

Scleroderma symptoms

4 posts in this topic

I am new to the topic of scleroderma. I have had low fever, joint and muscle aches and fatigue for 2 months now. Three weeks ago my hands began to swell and turn splotchy and then blue. They also tingle alot. Now my right forearm is swollen and feels hard in spots. My primary doctor says the hand symptoms is Raynaud's. I am scheduled to see a rheumatologist on the 26th. My ANA test is negative. I have had acid refux and Barrett's for the past 10 years.Does Raynaud's usually affect the forearm this way and are the symptoms constant? Is anyone on this site ana negative with scleroderma? I have had fatigue and joint aches previous summers and always attributed to being run down. I am sensitive to the sun also- I get a rash on my thighs when exposed. I have read that scleroderma is not affected by sun exposure. I welcome any comments and I thank you in advance for taking the time to comment.

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Hi Obxbound,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with Raynaud's symptoms and I've included a link to our medical page to give you some more information. I have Raynaud's and I would say that the symptoms are fairly consistent, particularly if my body temperature is cold or I am in an environment with air conditioning, such as a supermarket. I've not noticed it affecting my forearms, though.

 

It is quite possible to have negative antibodies and yet develop full blown Scleroderma, as many of our members can testify (step forward, Amanda! ;) ) Equally, blood tests can be positive and yet the disease never fully manifests itself, so you can see that blood tests are by no means conclusive. Rather a diagnosis of Scleroderma should be made on the clinical signs in conjunction with blood test results, in order to get the complete picture. You can see from this that the diagnosis of this complex disease is by no means straightforward, not least because it affects everyone differently. However, please note that apart from a now out of date first aid certificate (handy should I come across someone having a heart attack or needing a broken leg splinted, but not much use otherwise ;) ) I have no actual medical training, so you should verify my advice with your rheumatologist when you have your appointment.

 

Regarding the sun exposure, I've found that the biggest problem is with the medication I take (immunosuppressant), rather than the disease itself, although I think it would be unwise to subject your skin to a lot of sun, particularly as you are sun sensitive.

 

Please do let us know how you get on with your rheumatologist's appointment on 26th August.

 

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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Hello Obxbound

 

Welcome and I am also ANA & SCL-70 negative and always have been. Please see our videos about diagnosis of and difficult diagnosis of scleroderma. The point is made that blood tests should be used to support diagnosis or help dismiss a diagnosis, they should not be used in isolation to do either.

 

In addition it is possible to have positive blood work but never develop any symptoms of scleroderma and we regularly have enquires from people put in this predicament by doctors requesting the test in the absence of any symptoms. Diagnosis should be made using clinical symptoms and medical history.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Obxbound,

I am sure you are getting nervous as you are getting closer to your appointment on the 26th and I am hoping all goes well. I am not a doctor and cannot diagnose but your symptoms sound familiar to me although I am ANA positive. I am curious to hear how things go so please let us know.

 

Good luck!

 

miocean


ISN Artist

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