To be worried about possible Scleroderma diagnosis

[cockeyedoptimist]

I put this in health but I’ve reposted here for traffic

I’ve been having symptoms of breathlessness , persistent cough , muscle pain and fatigue for quite 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 as a possible diagnosis .
I’m a bit confused 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 fit the diagnosis or how severe it might be at the moment

My mum has scleroderma, there are two types as far as I know, one of which is internal and one that can be external. My mum has the internal version but also has other medical conditions so it's hard to know what causes certain things for her but she has reynaulds (spelling) and I'm sure that was linked to the scleroderma. I remember her having to go to hospital 1 day a week for about 6-7 weeks to get a drip that was to stop the scleroderma progressing. The drip came under a type of chemotherapy treatment, she had it and it worked well. I would wait until you have a firm diagnosis and then usually rhemy are good at providing information.

Thank you. That makes sense regarding internal or external.
I do sometimes get the painful white / purple fingertips associated with Reynauds so that ties in too.
As you say , I’m sure if the diagnosis is confirmed they will explain it all . I’m just trying to be informed so I know what questions to ask.
Many thanks for your reply

@cockeyedoptimist I think the main thing with every rheumatology condition is to find out what the clear treatment plan is. Try and find other people with same condition, often hospitals have groups for this which hopefully are getting back on now. But always remember everyone is different condition wise. Check if you would be entitled to any help going forward whether this be from occ health or financial. Most of all keep your chin up cause there are going to be hard days but also very good days!

Thank you. Yes I think once I get a formal
diagnosis I will look to connect with others .
I’m naturally quite a positive person , so im
going to have to draw on that going forward I think