Hi, I have an, as yet, undiagnosed autoimmune issue (I believe). I am waiting for a rheumatology appointment (been waiting since September last year) and have suspected psoriatic arthritis then dermatomyositis. But recently I've been wondering if I don't just have plain old Sjogren's Syndrome.
Because my worst symptom is muscle pain (then joint pain to a lesser extent) I've tended to dismiss Sjogren's, but the truth is I have every single symptom in the Sjogren's checklist. Itchy sore, dry eyes, ears, skin. Bouts of very dry mouth, but am constantly thirsty even when that's not active. Permanent cough, breathlessness, weakness. Photosensitivity and permanent rashes round my eyes and on one nipple which were very bad in the summer months (on collar bone too). I also get a very sore itchy vulva area which nothing helps. I could go on, but like I say, I have them all.
Trouble is, I've never had a positive ANA test, or any positive antibody test. And my question is, could I get my GP to do an ENA panel, or is this something that only a rheumatologist could/would order? I read that they are usually only ordered if you have a positive ANA test, but I wondered if it might be more useful? Although I suspect not without the positive ANA first...
Incidentally, I have a neurological condition of some years standing, trigeminal neuralgia, and I used to get PIP for that, but they took it away from me a few months ago and I have had to sign onto Universal Credit. I am 63 years old and haven't worked for years. The irony is I feel it could be good for me, but I am SO tired and sore all the time I just don't know how I will cope with trying to work. I've been getting fit notes for depression but I don't want to go on doing this because, ironically, I find it depressing. I REALLY want a diagnosis but I don't want to keep going begging for more tests.
Soooooo… not sure what I'm asking here, but maybe is there anything a GP could do to help diagnosis while I'm waiting, and also does anyone else get absolutely trashed with pain and tiredness?