I've been absent from the group for a while, owing to stuff. At my last rheumy review, I was advised that although my condition is deteriorating, so that I'm now housebound, there was no evidence of autoimmune flaring and so no need to change treatment - "see you in 6 months".
I decided to seek a second opinion privately and saw Dr Patrick Gordon - a specialist in myositis - at Kings Private (cheaper than seeing him at the London Lupus Clinic - money saving tip there, chaps!) The upshot being that he would like to take me on as a NHS patient, ordering MRI, repeat EMG, and lung function tests on the way.
Last week, I discussed this with my GP, who warned of the unlikelihood of getting any of this done (owing to the internal market in the NHS, which has caused Wales to restrict cross border referrals - as you'll know from Wendy's fight). So I am now waiting for a response to Dr Gordon's report from my local rheumy.
This might be of concern to quite a few people, so I'll keep you posted of any progress. Meanwhile, stay well! X