T my white end

Hi I have just found this site and feel like it's going to be such a relief to know I'm not alone. I have been suffering for about 6_7 years my GP firmly believes I have lupus ,and so do I. I have seen rheumatology ,the first 2 really didn't want to know and told me all sorts of disappointing info like ..it's the end of the road for you nothing we can do or diagnose, the other told me to learn to manage my pain...thought I had no choice but to with that one. The last rheumatology was much better listened to my symptoms ect saw pics of my rash and said I believe it's lupus and fybro myalgia, but won't diagnose until bloods are back, my bloods came back and she then really didn't want to know. The final visit was last year and she said I can't diagnose lupus...but I'm not saying it isn't either. So I was rushed into hospital last weekend in agony ,and just want a diagnosis now I'm sick of being on a string with no answers. No one in my area seems to know much about it but want to see lupus specialists who know what they're doing , I go to the Walton every 3 months for migraine treatment, is there anyone there or even Dudley that could listen to me. I'm desperate please anyone.

4 Replies

oldestnewest
  • Hi Aysheawatthey,

    Welcome to the LUPUS UK community forum. I hope that you find this a great place for support and information.

    I'm sorry to hear that you have been having so much trouble getting a diagnosis. After your final visit to the rheumatologist last year were you discharged or were they planning on seeing you again? Have you been tried on any treatments?

    There is a lupus specialist in Dudley. Dr Nicola Erb is a rheumatologist at Russells’ Hall Hospital. She may be the best person to get a referral to if possible.

    If you need more information about lupus and how it is diagnosed you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • hi I went to see my gp and told him about dr nichola erb and he has sent a referral , he is however very doubtfull that ill see her as he thinks the request will be rejected. if this is the case is there another way of getting to see her at all. it seems that ive had to fight every step of the way with being ill and my gp is the only one interested in helping,im so disappointed in north wales health system, i just wish they would just get into this century and learn about autoimmune diseases instead of shunning the people with these illnesses and making us feel so unimportant.

  • Hi Aysheawatthey,

    Unfortunately if your care is under NHS Wales then it may be a struggle to get a referral to Dr Erb who is part of NHS England. The devolved NHS makes things much more difficult - Wendy39 could tell you a lot about this.

    You could try a referral to a lupus specialist in North Wales if you are able to travel to Bangor or Llandudno? Dr Yasmeen Ahmed is a lupus specialist who has clinics at both of these hospitals.

    Another option is to cite the advice in the new BSR Guideline for the management of lupus in adults - lupusuk.org.uk/bsr-guidelines/

    The guideline recommends that difficult to manage cases of lupus should be referred to a specialist centre where possible. You could also contact your local MP/Assembly Minister for assistance.

  • Thank you Dr *** was who I saw in the early stages and she was absolutely disgraceful she was rude and did not listen to me, she also went on to say you'll have to just learn to cope with the pain...an insult to me as my pain threshold has always been very good . I'm just wandering weather saving up and going private might be less troubling as he stress of the local hospital is making me even worse. Thank you so much this is a well needed source of support for me as I feel so alone and misunderstood most of the time, I wander at times if People really understood how much pain I was in and how my symptoms affect me it would be so much easier, and may even realize just how difficult and how much of a struggle even the simplest things are to do for me. My GP really is brilliant and has said even though it's difficult that I still have to fight...I'm afraid my fight it getting so difficult I'm afraid it's getting close to giving up ....and believe me that is something I've never done or even contemplated in my whole life before. Thank you for your help and support.

You may also like...