My name is Yvette and I am new to this forum. My mum had progressive systemic sclerosis scleroderma, she was diagnosed at 28 and gradually lost all of her mobility until she died at 42. She had the classic facial mask and claw like hands, all internal organs were affected, she suffered a lot.
I am now 35 and have a serious aversion to doctors! I have suspected for years that I have Raynaud's, fingers turn white in the cold and become very painful. Recently I have had problems breathing, and my fingers have been going purple even when it is hot.
I am in Algeria at the moment, so I made an appointment with a heart specialist as I thought it could be heart related. I had an ECG and an ECHO done and both were fine, however when the doctor took my history he said my symptoms are of an auto immune disease and likely that I have secondary Raynaud's rather than primary.
The health care here is not brilliant, and so far I can't even find a doctor who knows anything about autoimmune diseases let alone test for one! I will be back in the summer to the UK, but I think it is just as difficult to get a diagnosis there too.
My symptoms include:
joint pains, knees hips, finger toes, shoulders, not all at the same time, sometimes severe and sometimes not
poor circulation, swollen feet and legs, varicose veins
problems breathing, dizziness
When I have done some research I think my symptoms mirror lupus more than scleroderma, can any one help with some advice on getting a diagnosis, anyone else have a parent with scleroderma and then get diagnosed? We were led to believe that it is almost impossible for a mother and a daughter to get this disease!