Hi.
I don't have scleroderma but my wife has diffuse systemic sclerosis. Unfortunately it isn't officially diagnosed. That in itself is a long story. She has two other immune system conditions, both rare, and both dermatological in nature. She is an NHS patent. A few years ago a general practitioner (GP) told her she had elevated antibodies in her blood that could indicate sclerosis. Last year she started to develop symptoms that pointed to systemic sclerosis (pains in joints, pains in kidneys, issues with swallowing, weakness and skin tightening) and was admitted to our local hospital as an in patient for over a month where every test under the sun was done on her.
The most confusing part of all this is that during that time quite a few doctors who are not rheumatologists saw her and agreed she had systemic sclerosis. However, the two rheumatologists at the hospital did very little to examine her and immediately stated that she did not have the condition. Since then there has been a back and forth between general practitioner's and specialists. The most recent visit was to a dermatologist who she has been seeing regularly for one of her other conditions. This woman had an understudy who was actually doing a research study on systemic sclerosis and also confirmed she had the condition. However, because none of those that agree she has this condition are rheumatologists, they apparently cannot officially put the diagnosis on her medical records. Currently her records show as fibromyalgia and we have reason to believe that this may be because she also suffered from anxiety at the the time she was admitted to hospital.
Her symptoms are getting worse. She is in a lot of pain most days, has developed chest pains and a cough. Gets weak and tired very quickly and can feel her skin getting slowly but progressively tighter. We are worried that she will not get a proper diagnosis or treatment. She has been given nephradine, quetiapine and an emollient cream. Doing my own research I think she should either be on steroids (which she once had for her other conditions) or immunosuppressants.
Any attempt to get a proper diagnosis is getting blocked. Often at general practitioner level. Is there anything we can do to get her to see an NHS specialist who is able to overrule the original rheumatologists and to confirm (or deny, I still hold on to the small hope that it isn't scleroderma although we are 99% sure it is) the diagnosis and start her on treatment?
