Myositis consultant

[Peanuteater]

I am self diagnosing the pain I am enduring most of the day and all of the night. Can anyone tell me if there is a myositis consultant in The Midlands, either NHS or private practice?

[whisperit]

Hello Peanuteater

What's your history to date? Have you a diagnosis at all? Has your GP offered an opinion? Have you been referred to Rheumatology at all?

Generally, there isn't such a thing as a specialist who works only on myositis. Consultants who work with myositis patients are Rheumatologists (although they may occasionally be neurologists etc, depending on the symptoms).

In any case, even if you go privately, you will need some kind of referral - often from a GP - with some clinical details (eg blood results) that help the consultant understand the problem.

Apologies if you know all this; its just that its hard to help without a bit of background

x

[Peanuteater in reply to whisperit]

Hi thank you for your reply. I have been down the Rheumatology route and been told physio is the answer and there is nothing more can be done. I've been to physios for years and no help at all as it's not muscular pain. I believe it's an auto immune condition that I have and a doctor in that field would be useful. Any help would be gratefully received!

[Galaxies1]

There aren't usually specialists just in myosotis but there are rheumatologists who have experience in myosotis. It's best to do your research into finding these. Then work out who you feel a referral to would be useful. They all have different approaches. And as the disease is rare many are involved in trials and research. It's your choice if you want to be referred to someone who may also put you into a series of trials.

If the myosotis has affected other organs like the heart or mobility then you'll also need separate referrals to those drs. If you get the main referral in place you can start collecting your team to support.

It's best to do your own research too as it's very much a patient specific illness. Good luck

[Peanuteater in reply to Galaxies1]

Thank you very much. Is it possible to get to see an auto immune specialist, do you know?

[Galaxies1]

It really depends on your GP or you go private and self refer. Yes personally I think getting to the root of the inflammation is crucial so looking at what's going on with the auto immune system. But medicine doesn't always do that it boxes things. Functional medicine looks at the auto immune system and the body as a whole. There are immunologists as well. Best advice I can offer is do your own research and see what feels right. If you have a gp you trust then talk it through with them. Good luck

[Peanuteater in reply to Galaxies1]

GP didn't know what myositis was. She has referred me to the NHS Complex Pain Clinic, whom I am speaking with on Tuesday. I just thought it would be good to have the name of a consultant in readiness to ask to be referred to. When searching for myositis consultant, they all turn out to be researchers and without a consultancy. No way of speaking with them.

[Galaxies1]

absolutely you should have names. GPS tend to not get this condition I was misdiagnosed and gas lit for 5 years even when I was very sick it took a private diagnosis and the GP still don't get it 😔 keep looking hopefully you'll find someone. It may not be in your area but maybe you can start with a zoom call. 🤞

[Peanuteater in reply to Galaxies1]

Thanks for your reply.