Well today I had my long awaited appointment with a professor at the University College Hospital London. Despite my ANA being raised and other blood tests reading above normal that are associated with lupus, the pain in my joints, rashes on neck, sun sensitivity, butterfly rash on face that the GP didn't see because by the time I got an appointment a week later it had died down to look like eczema as opposed to looking like and feeling like a burn in the shape of a butterfly across my face and a little on my eye lids. Although he did see the rash on my chest which prompted the blood tests but he didn't describe it in my notes. Headaches, night sweats, repeated chest infections etc his diagnosis - not Lupus.
He was more interested in my joint pains, and asked me to do some exercises like putting palms together then backs of hands together, one hand behind my head and the other behind my back to see if they met - which they did and I could hold each hand. Lots of bending of limbs... he said I have hypermobile joints. Yes I could bend my thumb to my forearm when I was younger and still can almost do the same now I am 62 with an inch gap. So too my two sons. So he said it looks like it could be CTD. But thinks the chest infections and rashes might be sarcoidosis. Great.
I don't want Lupus neither do I wasn't sarcoidosis, but that diagnosis was made years ago by one of the leading specialists in sarcoidosis professor Steven Spiro. So too was a diagnosis of fibromyalgia made years ago too.
Today's appointment made me realise that any autoimmune problems can morph and if you have one you are quite likely to develop another.
I have developed a really bad pain in my shin which has been like this for several weeks and now a slightlynraised swelling along the bone of about 2.5 inches and 1.5 wide has now appeared. The sarcoidosis clinic want a biopsy done my GP wants an ultrasound and the lupus clinic were disinterested. The pain is so bad it comes in waves which wake me up at night. Like terrible toothache right in my shin bone. The sarcoidosis clinic said it could be a sarcoid lesion or something else, my GP wants to rule out a cancer.
So what's in a name really Lupus, Sarcoidosis or CTD I don't think anything much can be done for any of them except using steroids when a flare occurs. I feel disheartened that another name has cropped up for consideration. When I feel just as poorly as I did, but now I am back to square one again.