Newly diagnosed?? looking for support and advice

[Nene2023]

GP diagnosed SLE and SS in September 2024 from positive blood tests - after years of constantly complaining, being in pain and not being listened to - (questioning myself at times) - rheumatologist now says blood tests positive since 2020 but didn’t inform me or GP 😳

Cannot get appointment with him or alternative rheumatologist as says doesn’t need change to management plan (which is non existent) not taking any medication and struggling daily with fatigue, headaches, joint pain, spasms, stomach pain, nausea and depression

Does anyone have any advice on what I can do please?

[catherine1712]

I am not surprised. this story repeats itself in the UK, unfortunately.

[GloomyEeyore]

I would say that I want referred to a different rheumatologist for a second opinion. It is seen as a right, though not a legal one, but no decent doctor should refuse your request.

patients-association.org.uk....

[Poshcards]

Hi, find a different rheumatologist xx

[Nene2023 in reply to Poshcards]

I’ve already asked for a referral to a different specialist but as yet it has not been actioned x

[JOWE]

Take good quality probiotic pills every day. JOWE