where do i go from here

I am 100 per cent i have lupus and fibromialgia been diagnosed with fibro but no one will commit to the lupus because i keep getting neg ana and have been told by my gp that i have to get on with it see how i am in a year i had been off work and given up my job for a year all ready so 3 weeks ago i took it upon myself to send photos and a list of symptoms to st thomas hospital in london which has a lupus centre havent heard anything back yet here,s hoping lets hope they dont let me down

8 Replies

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  • Have they done a double stranded DNA test?

  • You know your body and if you think you are on the right track then you need to keep going. I know nothing happens quickly and it feels as thou they think you have no rush and all the time in the world... I dont know how many docs i saw but it took about 10 yrs from losing my job andd being off sick from 2001 but i recon it started 25yrs ago but the more time goes by the more the illness will show it self or improve.

    I have found pros and cons about haveing a name for the illness.

    Good: docs dont look at you as thou you are mental or putting it on. You might get the right meds to help with the illness.

    Bad: travel insurance more difficult. You might have trouble getting a job if you tell them or if you dont

    Good luck and i hope you do get an answer

  • Hello

    You should ask for a referral to St.T's. Its the best place to be.

  • hiya doc wont send me anywhere else think i have gone over the nhsbudget that im allowed thats why i took it upon myself to write to them and to top it all i have to go to d.w.p. medical on wednesday 9th to prove that i am ill am worried as e.s.a. is only income

  • Hey,,i also knew i had suffered along time!!With Fibromyalgia at least ten years!!It took 6years to actually get Lupus diagnosis,,the doctor you are seeing sounds to me like he don't really know what he is dealing with and fobbing you off like alot of other people have felt like.Id go back and demand more tests and demand to be taken seriously!Good luck and best wishes to you.

  • i have had fibro for 8 years only had it diagnosed last year had to diagnose myself then, just wish someone would listen to me so i dont have to keep worrying

  • I am in a similar situation, have Fibromyalgia , jessners Lymphocytic infiltrate and sicca syndrome... I have a fantastic GP thankfully as I get so low and he understands. Medicine

    is not an easy science and we are all different!

  • hiya my doc was ok in begining now he,s not interested at all costing him to much money

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