I posted about a month ago, asking about osteoporosis with lupus and wondering whether I should have a Dexa scan. I saw the usual rheumatologist last week (not the chief, unfortunately, coco!) and my GP husband came with me, thank goodness because I wouldn't have remembered all that was said. The rheumatologist recognised immediately that my walking and balance are much worse than when I was last seen, in October. My CK is still high but all the other bloods, inc Vit B12 are within normal range. My ANA Hep2 remains positive. The upshot of that lengthy appointment was referrals for xrays (hands, chest, poor chilblainy feet); an echocardiogram; a Dexa scan and respiratory function testing. I'm to be seen by the neurologist again, in the peripheral neuropathy clinic and will learn then whether I'm to have muscle and nerve biopsies. Muscle MRI and nerve conduction testing haven't shown any apparent cause for the muscle weakness and stopping the Hydroxychloroquine for 3 months didn't help, so I've restarted it because my cutaneous lupus flared so badly.
So that's where I am at the moment. A real flurry of activity, after a year of torpor and "Let's wait and see. Carry on with your exercises".
If there is no definitive diagnosis once I've had all the investigations, I've been thinking of going to one of the specialist centres; Guy's and St Thomas'; RNHRD in Bath or the clinic at UCLH. However, I've just searched on this forum and found Coppernob's post from 4 years ago and several replies. Interesting...I will Reply to Coppernob but does anyone have any update on the administrative deficiencies experienced at Tommy's? I was hoping for a centre where all the relevant specialities are in the same, dedicated unit and hopefully, someone with expertise in managing Erythromelalgia (do I hear "Fat chance!" echoing back at me from the community?") but if one has appointments put back ages or calls to specialist lupus nurses are not returned, then maybe it's better to stick with one of the local teams. Paul Howard, a question for you: What are the criteria to gain Centre of Excellence accreditation with Lupus UK?
Great to hear about the article in Medpage about Incomplete Lupus. Thanks, coco. We can all point it out now, to skeptical GPs and rheumatologists, which should help get it more widely adopted by the UK establishment. BTW, I agree, that's a rubbish name for probable or suspected lupus.
All the best to all of you.