Scleroderma & Raynaud's UK (SRUK)


My GP originally diagnosed me with Raynauds, and in the beginning my hands would go through the standard changes, red, blue, white.... but after 2 months they started to stay red, feel like their burning, dry, shiny, sore joints, shakiness , twitching, ..... went to a private rheumatologist who said it is Palmar erythema result of a virus and it could eventually go away, i`m confused because originally i had normal raynauds symptoms and now always red. i`m convinced that theres something else underlying, they are only getting worse and more problems, thinking about getting a second opinion. Waited 5 months already for NHS and probably more to go but can`t afford another private... this is driving me insane not knowing,

3 Replies

Just keep pushing for another referral, preferably with a different rheumy. Also, remember that CREST illnesses aren't always indicated in bloodwork, it's possible to have Raynauds + SSc without any indicators at all in bloods. I know this as that's exactly my situation.

At first my rheumy was cautious about diagnosing SSc because there were no indicators in my bloods. Further tests however confirmed it's Raynauds and SSc. Nail fold tests and thermo-imaging were definite positives, and a couple of other symptoms were the defining factors.

Tbh I really hope it is something that'll subside, you really don't want positive results on any CREST illnesses, obviously.

Anyways, good luck.

1 like

Hey thanks for the reply,

Do I just asked them to do these tests? I brought a list of symptoms the last time and he looked at me and said, no im 99% sure not this, then said maybe lupus, ANA negative, and thats it never heard of again....


You shouldn't really have to request them tbh. But if you've not had the nail fold (it's got another name, but it escapes me atm) and thermo-imaging I'd definitely be enquiring as to why not.

If however you've got a definite diagnosis of something different like you say, that's going to colour the types of testing/or not that you're offered I guess.

Personally I'd be asking;

(1) What's the tests they've done to definitely indicate the diagnosis you disagree with. Could these also indicate any CREST illnesses.

(2) Are they willing to indulge you and offer you further CREST illness testing.

(3) Ask your gp if you can see a different rheumy if you're not satisfied with the one you've seen and the diagnosis they've given.

You need to be proactive when it comes to your health and the professionals you see. Speak your mind, as even if you're wrong and it's what they've said then they might be able to put your mind at rest.


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