Hi, I haven't got a diagnosis of Lupus - I'm aged 51, of below average weight and have a 13 yrs old with special needs... I have a diagnosis of undiferentiated connective tissue disease. I'm ANA & Ro Postive. Am Vit B12 defficient, have raynauds, on Thyroxine, history of repeated miscarriage (obviously when younger!).
I'm on Hydroychloroquin 200mg a day since begining of June 2012.
Have not seen the same Doctor twice at the hospital - the Connective Tissue specialist nurse on my first visit with her, lunched into... "a lot of people WANT to have lupus" and I don't think you have... So I was already in one of her boxes...
On a follow up visit she said she thinks I have fybromyalgia as 2 weeks ago as I said all the symptoms are still there and the pain is still bad. The previous time I went another Doctor said I definately didn't have Fybromyalgia, and if the Hydroxychloroquin worked would look at increasing the dose to 400mg daily.
While I was there the nurse asked a Doctor to come in who didn't even look at me - he said if the pain was still there, stop taking the painkillers - plus " should expect to be tired at my age looking after a special needs child" - then he walked out.
The nurse did order more bloods, and the resluts have shown my CRP has come down to 5.6... so inflamation is shown as in the normal range now - I can follow all that. But they just don't listen to my other symptoms...
I still have the pain, no evidence of joint/bone issues of swelling of the joints (xray shows) - but I hurt!
Mouth ulcers -
awful fatigue - unrelenting...
aching muscles and joints
swallowing problems (have had barium swallow which was all OK)
always cold (thyroid has been checked and iron levels)
nails are brittle flaky ridged and convexed, which is odd and getting worse
depressed (on citralopram 20mg)
I have a rash that comes up on my cheeks (but as its never been there on a visit they don't believe it - even though I showed a photo)
feverish at times for no reason
hair fall out lots (but as I have very thick long hair, the nurse said thats not a problem then!)
These symptons have been building up for quite a long time, years - and are slowley but surley getting worse...
Has anyone else had similar issues of not being listened to / understood by the hospital Doctors and Nurses???
I am a intelligent person and am feeling very frustrated by the system...