My question is about the best way of... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,929 members5,465 posts

My question is about the best way of getting a diagnosis of scleroderma or of discounting it?

strongmouse profile image
5 Replies

I was diagnosed recently with Raynaud's disease which can get quite painful, but is manageable. I have GORD and a small hiatus hernia. However I do get abdominal pain and have asthma exacerbated by allergies. I have just had a CT scan and was told the pain is probably musco-skeletal, plus I have an atrophied Pancreas. I am thinking of asking my GP for a blood test for autoimmune disease. Any one's experience or ideas most welcome.

Thanks

Written by
strongmouse profile image
strongmouse
To view profiles and participate in discussions please or .
Read more about...
5 Replies
OldTed60 profile image
OldTed60

No idea about sarcoidosis as it’s extremely rare to have this and scleroderma - do you have lung issues as well as asthma? I guess GI, late onset Raynauds and the pancreas point equally if not more to scleroderma so you should get full ANA & ENA panel run and ask to get the Sarcoidosis antibody checked too although don’t know much about it tbh xx

strongmouse profile image
strongmouse in reply to OldTed60

Thanks Old Ted. Must have had a bit of a brain storm - I meant scleroderma! 😆

(Its my husband has symtoms similar to sarcoidosis).

I'm seeing my GP next week and it helps to know what I'm asking for. Will make a note to take with me.

OldTed60 profile image
OldTed60 in reply to strongmouse

Hi Strongmouse. You need to edit the title to scleroderma rather than sarcoidosis to get more replies. Just go to the more option under and find the edit button. If you have symptoms of scleroderma or other rheumatic diseases then you need to ask your Gp for blood tests for ANA, rheumatoid factor, inflammation etc. If these come back negative then it’s less likely to be secondary to a rheumatic autoimmune disease but if you have other signs or blood work they hopefully they will refer you straight to rheumatology. Remember though that scleroderma is rare and done GPs will know very little about it compared to RA or even Lupus. Good luck x

strongmouse profile image
strongmouse in reply to OldTed60

Thanks Old Ted60, I've edited as you suggested. My GP didn't know much about scleroderma as he had never come across it, but he took the time to look through the GP online information while I was there. He listened to me and agreed to the ANA and other immune markers blood test plus a routine blood check up. So will wait and see if they show anything.

Clangerscat profile image
Clangerscat

Hi strongmouse, I hope you get some answers from your blood tests. It took me nearly two years to get diagnosed with scleroderma and it was just good luck that I had an appointment with a gastroenterologist consultant whose husband specialised in scleroderma and recognised my symptoms, tight skin , drawn mouth, and clawed hands. I know it was a very specific blood test she did for me so if you don’t get the answers you need perhaps it would be worth asking to be referred to a rheumatologist. Take care.

Not what you're looking for?

You may also like...

Can scleroderma get worse

I have localised scleroderma and it’s attacking my skin. What I would like to know is if there’s any

Renal decline questions? Unsure if I’m getting the best advice

sclerosis in 2017 secondary Raynauds started 15 years ago. Severe Raynauds, recent GI issues...

Talking to family members about our scleroderma

information now, unless they ask, but I have had mixed messages - that they get angry at me for...

Thought I'd post about the Scleroderma News newsletter from U.S.

lot of good articles on Sclero/Raynauds/and other autoimmune diseases. This one has some items...

Can anyone recommend a way to warm my hands up when I get an attack?

just get cold again. I've tried wearing gloves but nothing seems to be effective. I'm 20 and have...