I'm feeling upset and very despondent. after 2 1/2 years of on going illness, I honestly thought an autoimmune condition was the answer. 6 months of fighting to see a Rhuematologist, initial consultation went really well (he put me on steroids and said he was fairly confident I had Lupus, but possibly had other conditions along side so wanted to wait for the blood tests before making a firm diagnosis), then yesterday all blood tests came back negative so now off steroids and made to feel like a fraud again!
I did get awarded PIP on Tuesday (standard rate for both), so should at least be pleased that my symptoms and there effects are being taken seriously. I just now feel like there's no hope for the future.
The Rhuematologist did have some suggestions; he says do have Raynauds so can have medication in winter to help with that. He is certain I have carpel tunnel (splints have helped a little), i have a nerve test booked to confirm, so surgery could help with that. I have really bad bunions, GP said couldn't have op until Rhuemey diagnosed underlying condition, the rhuemey now says the bunions could be causing the joint pain in ankles and knees so surgery may be the answer for that too. As for severe abdo pain..... well its back to Gynae (who have discharged me saying nothing they can do- must be rhuematalogical lol). last diagnosis from them was pelvic congestion, small ovarian cysts (simple), and possible adhesion's (although last lap in Aug 2014 showed no adhesions). Only problem now is what about the severe fatigue, brain fog, mouth ulcers, sun sensitivity, headaches, pluretic type pain, and breathlessness???
6 months of battling to see Rhuemey, after GP and other consultants all certain it that all symptoms where due to autoimmune/ autoinflammatory, and now back to square one.
n.b. I asked Rhuemey about seronegative lupus- he said it dosnt exist! I also asked about my low vitamin D levels, he said most people in north of england have low vit D and although theres lots of research papers written about vit D and autoimmune type conditions, he dosnt think theres any conection or even that having a low vit D will cause any symptoms ( he said it just leaves you open to weak bones and in bad cases, rickets).