Possible scleroderma diagnosis

[cockeyedoptimist]

I’ve been having symptoms of breathlessness , persistent cough , muscle pain and fatigue for a while now. I’ve now had blood tests , x Ray, ECG and a CT scan the consultant thinks it is an autoimmune disease and mentioned scleroderma .
I’m a bit confounded as I don’t really have hardened skin, which seems to be main symptom when I Google
i just wondered if anyone has experience of this or could have me any tips for questions for my next hospital appointment.
Dr Google isn’t helping as I can’t work out how my symptoms for or how severe it might be at the moment

Hi i have Scleroderma( diagnosed for 7 years) the hardened skin thing trips up a lot of people. Its more likely your skin will be tight and shiny, possibly red too, esp on your hands, lower arms and face. You may also see little red spots that are flat and painless. Do you have Raynauds( cold hands and feet that can change colour and be painfull with temperature changes and stress) That is a big Scleroderma marker.

Hi thanks for replying
yes I do get reynauds in my fingers ( more noticeable in the winter )
I have small patches of hard / rough skin on my thumbs and index fingers , but the most noticeable symptom at the moment is breathlessness and muscle pain in my legs
I’ve got a hospital appointment in the next few weeks so hopefully they will give me a confirmed diagnosis as I’d like to know what’s going on

Lots of medical staff( including Rhuematology doctors) know very little about Scleroderma. I cannot stress enough how important self advocacy is as chances are you will know more about your illness than the doctor will. Some really good sites to join-
SRUK-Scleroderma and Raynauds UK. FB and website. They have a list of regional centres of excellence for Scleroderma treatment depending on where you live. Because so many doctors are so clueless about treatment, many patients choose to travel to get to these sites for treatment( They are all NHS btw)
Health unlocked the Scleroderma board- a fantastic online community for support.
Please be aware because its a rare disease a lot of the online material is meant for doctors and pretty difficult to understand.
Im more than happy to answer any more questions if you want to DM me at any point.

Thank you so much . That’s a really helpful post .
it’s Interesting to know that even doctors are not knowledgable about the condition
I should have more information in a few weeks as I haven’t had a formal diagnosis yet . It’s just what the consultant thought might be a possibility. I will know more after next appointment and I’ll drop you a DM then if that’s ok
many thanks

No problem. Hope you get some answers.