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Getting a diagnosis

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  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    if i were you i would maybe think about finding a prof doc that does research and uni work, and see if they might be able to shed some light...

    allergy tests?

    have they looked at any other auto-immune problems aside lupus and HIV?
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Sikorah wrote: »
    What about some sort of malabsorbtion/digestive problem? The fatigue, ulcers, coldsores, nausea, dizziness , cold extremeties, weight loss, low body temp, mucsle aches, generalised pain and shittyness could be down to deficiencies/intolerences????
    Do you have a low body weight?

    I do, which doesn't help my 'of course I'm eating' case (neither does a history of EDs - if you ever want any genuine illness to be taken seriously, don't have depression, anxiety or anorexia in your notes!). It's not massively low any more, though, although I do have to eat loads or it just drops.

    But I've been given the once over by gastroenterology (wide selection of blood tests and a camera up each hole) and been given the thumbs up from them.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    have they looked at any other auto-immune problems aside lupus and HIV?

    They've looked at pretty much everything, I think, and then dismissed them, generally for reasons based on randomness. That's my problem with the whole deal. It's not the amount of things they tested for, cause they've tested me for pretty much everything. It's that they just don't listen to a word I say, and change their minds about everything from one clinic appointment to the next. I can't keep track!

    It's like when they said, 'well, we've ruled out an inflammatory arthritis cause your joints just hurt, they don't swell up'. Then I said, 'but they DO swell up! it's in my notes', and she just said, 'if you just have pain, you're probably just overworking your joints' like I'd not spoken at all!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    well maybe ur idea about writing everything down and taking it in to the doc is the best one.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    For certain things it's simply better to go to the emergency room at the local hospital and wait 3 or 4 hours to be seen but at least have someone see you in a place where there's xray machines, and other things to do more extensive tests.

    I had an eye condition which worried me greatly - had to wait 4 months for an appointment and by 4 months it had gone and there was nothing to see - but it was 4 months of worry

    Same thing happened 3 or 4 years later and went to the doctors again but luckily mine was on holiday so saw a locum (spelling?)

    When I told him last time this happened it was 4 month wait he said just go direct to the emergency room and that's what I did and it all got sorted out that day - no months and month of worry and cos they were able to examine me as it was happening and affecting my eye - they could tell me a lot more about the conditions and told me exactly what to take to prevent it in future.

    .. The UK health system is based on waiting and waiting and waiting - rather then actually getting things done.


    I would suggest you use the internet as much as possible and go through all the possibilities you can of conditions that fit your symptoms and then contact their relevant support groups - maybe they can help somehow.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I can also suggest you write out your symptoms and post on Yahoo Answers

    http://answers.yahoo.com/

    It's a pretty amazing system - and you can often find experts from around the world will pick up on your question and have an answer for you
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