Looking for Myositis specialist

[Natalie8383]

Hi, I'm currently diagnosed with fibromyalgia but another doctor found anti ku antibodies. My rheumatologist has been in formed and I've seen her (last time was 4 years ago) she said ku is really rare and a myositis antibody but refuses to run anymore tests and says all my new symptoms are just fibro, same as and I quote the other 200 people I've seen this year who are worse because of covid and not moving.(until Xmas I was working full time in a school, now I need a walker to walk because of muscle spasms)I'd like a second opinion and need to find a specialist in England around the London ish area. Thank you so much for reading this

[Doralora]

Try joining the Myositis UK community forum on Facebook. They are very knowledgeable and helpful.

[Natalie8383 in reply to Doralora]

Thank you for your reply, I'll do that

[Catpuss66]

If you go into files in the FB group there are lists of specialists ask Jo Goode founder she sees good Doctor in London. Might be worth going private for first visit, then back to nhs get seen quicker. Best of luck

[Hidden]

Kings college Hospital London is a Myositis centre. I think tge dictir is called Dr Jackson but just get referred to Rheumatology there,

[Natalie8383 in reply to Hidden]

Thank you

[Jo-Goode Administrator]

Dr Patrick Gordon heads the Myositis centre at Kings College, ask your GP to refer you on the NHS. A one off private appointment might be helpful to get his opinion to speed things along kingsprivate.com/consultant...