Hi all. I saw my rheumatologist for my 6 monthly check this week. I am a little upset with how things have been going lately with my health. I have coeliac disease, underactive thyroid and lichen sclerosis as well as many of the symptoms of lupus / sjogren's, in particular, excruciating joint pains which are mostly in my fingers, wrists knees and lower back. Also they migrate and flit from joint to joint. I also have muscle pain, fatigue, dry and gritty eyes and a raging thirst at night.
I take 200mcg Plaquenil and manage in between with paracetamol and ibuprofen. He wont prescribe more as I have no firm diagnosis.
The trouble is, I have never shown positive in any of my bloods that I am aware of apart from a raised ferritin (there is haemochromatosis in the family / and other auto immune problems). The consultant says indicative of inflammatory response but EVRERYTHING is negative! I could cry with frustration as I know how ill I am when in a 'flare'. He has written to my GP suggesting sjogren's / UCTD / soft tissue rheumatism - but negative bloods.
I have been seeing him for 2 years (but had joint probs since childhood) and his diagnosis has changed 3 times. I appreciate these things are hard to nail, but I need some answers. My husband suggests I ask for a referral as all you good people on here have been helped by going to a Lupus specialist centre.
1. Can anyone tell me, when asking for a referral to St Thomas' London, does the GP write ahead and then the letter arrives by post?
2. Do the doctors help diagnose by symptoms and history rather than relying merely on blood tests?
3. If the letter arrives by post, can you ring and go on a day suitable? I work 3 days a week and would obviously travel the 230 miles on my days off.
4. Does your local rheumatologist need to be informed? Do they stop you seeing them if being treated at St. Thomas'?
Sorry about the long post, and thanks in advance.