So many symptons that may suggest i have Lupus, yet my gp dismisses it without thought/listening or looking at my records with many of my symptons. Ive had more blood tests than i care to remember in the last 5 years, tests for m.s, luchemia and m.e.
Is there anywhere in west mids, north west or north wales that may shed some light??? (Paying/private)
Hi BabaOsw,
I'm sorry to hear that you are experiencing so much difficulty getting a diagnosis for your symptoms. Have you asked for a referral to a rheumatologist? Either Prof. Caroline Gordon's clinic at Queen Elizabeth Hospital in Birmingham or Prof. Ian Bruce's clinic at the Manchester Royal Infirmary have a number of lupus specialists available through the NHS.
Hi. Thank you for such a prompt and informative reply.
Come New year I must be more proactive instead of "oh well, the current ailment is subsiding, i will leave it for now" kind of attitude. Certainly the last 3-4 years have become more difficult and affected home/family life.
Appreciate your help
I can sympathise with as I too have had many different opinions with docs and blood test results. My rhumey has changed his mind more times than I can remember.
It seems like every appointment he changes his mind. So now I've made an appointment with the lupus centre in London (private) to get to talk to a lupus specialist and hopefully find the answers to my many questions.
IF you are prepared to go private then research a good lupus specialist in your area and it's only then a matter of a phone call and then an appointment. Personally I wish I had done this years ago.
Um have you wrote too your prat ace manager at your Drs ? If not make a complaint to her/him and tell it like your saying on here , if no good get in touch with NHS England by email tell them your not being listend to and they phone up your prat ace manager and then they have to do what your asking for , some answers and make sure your GP writes or types on your notes that your confused and need answers
Good luck all the .love & peace Claire xxxx
It took3 years for me to get a result at the hospital. I was told they had list my notes. The doctor said I had CMT but didn't know what type. Eventually he said in exasperation it's type 1 but I'm not certain. When I've mention Lupas , which I feel sure I have, I was totally ignored.
does anyone get sharp stabbing pains that take your breath away?
Well finaly starting to get some answers!
Advice please where to get help re daughters school, possible fine for absenceRandom question but for anyone who has any degenerative joint problems alongside their Lupus....
How do I get answers? 
