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Merve

My doctor doesn't want to diagnose me, even though I have symptoms and antibodies.

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Hello,

 

I really  hope  that you guys can help me a bit with following problem:

 

One year ago I went to my rheumatologist because I had stiffness in my fingers and pain (in the morning and also in the night). It always gets worse in summer when It gets warmer (it is somehow also linked to sweating). There were days when I could barely write because my hands felt puffy, started to sweat a lot and were extremely stiff. My doctor found  out that I have scl 70 antibodies, my ANAs have been always negative (I do regular check ups), no rheumatoid factor, all other Blood values are good. My doctor said that he doesn’t believe I have scleroderma but I am not imagining to have pain and the stiffness; when I am stressed or did a lot of physical activity the pain and stiffness spreads to my feet. I have the symptoms of my hands for 4 years now and nobody seems to understand it or is willing to help.


I am a medical student so I did a bit of research and found out that scl 70 is  mostly specific for the diffuser type, I went to a lot of doctors and got my organs checked, everything is fine until now, I don’t have lung involvement, my heart is fine (apart from a mild congenital regurgitation) and I do not have Raynaud's syndrome (I did a capillary bed examination). My rheumatologist said that I should not worry and he doesn’t want me to come again because, as I said, he doesn’t believe I have scleroderma. 
 

I am really worried and afraid. Even though I am mostly fine and "just“ have the symptoms of my hands, I worry that soon it might get worse and affect my organs.. well, sooner or later it will because I have the antibodies. 

 

My question is if I should do regular check ups of my organs (each year) and if some of you have had similar symptoms at the beginning and how long it took in your case until the disease spread? 


Oh and I have hashimotos disease, I don’t know if that’s relevant.

 

 Thanks in advance 

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Hi Merve,

 

Welcome to these forums!

 

I'm sorry to hear that you have positive blood test results and are experiencing worrying symptoms. Regarding your blood tests, please see our sticky on the subject.

 

Scleroderma is a very difficult disease to diagnose correctly and we have had other members who have received the same advice from their consultant -  I.e. wait and see how the disease progresses. Of course, it is quite worrying for you, particularly as a medical student (a little knowledge can be a dangerous thing :wink: ) and whilst the symptoms you describe could relate to scleroderma, they could equally be due to some other health problem.

 

Please note I have no medical training, but my suggestion to you would be the same as your rheumatologist -  to try not to be too concerned at this stage. It's impossible to compare your symptoms with anyone else, as this disease affects everyone differently and therefore without the benefit of second sight, it's impossible to know the future prognosis.

 

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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