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Do I have right to request a specialist.

Posted , 3 users are following.

Binnie_78
Binnie_78

Hi I have had sarciodsis for the past 3 years; I seem to have it everywhere in my body. I had an op 2 years ago to remove 2x 13cm sarciod on my wind pipe. I started to have black outs and dizzy spells. Had an MRI, they showed us the scan; we were horrified there were very large areas of black. I saw a nerve specialist, he said that he wasn’t sure but felt that I must be having lots of strokes !!!! They have put me on meds for my heart and to thin my blood. I did ask my chest specialist to refer me to a sarciod specialist; he said that he didn’t think there was a need for it. I still have ‘small strokes’ I get very very tired, and can spend 2 days in bed after one of these ‘strokes’ I worry that I am getting worse and no one seems know what to do or care.   

1 like, 3 replies

3 Replies

  • john10431
    john10431 Binnie_78

    Posted

    Hi Binny - You make me feel as if I'm getting off easy. I am so sorry that Mr. Sarcoid is working you over like that. I now use an internist as my primary care physician. Not much she can do. I had a bood infusion a while back, to clear out excess calcium. It helped, for a while, I think. I have never heard of a Sarcoid Specialist. I think I'll see if there's such of a thing in the US of A.
    • Binnie_78
      Binnie_78 john10431

      Posted

      We have many specialists in the UK, but I live in a small town at the very tip of cornwall. It is very hard to get to see anybody outside of Cornwall. 
  • Nickademus
    Nickademus Binnie_78

    Posted

    Hi Binnie

    Yes of course you have the right to request a specialist. However, to get access to one on the NHS you will have to get the GP to agree to funding it if there isnt one in your area. Im in Sheffield and I have been lucky to have a Sarcoid specialist. The hospital trust is a teaching hospital so we do get access to specialists. Its wrong that its a postcode lottery but that is the system.

    I looked up Sarcoid Specialists and found the Royal Brompton hospital is the leading light on the condition. Have you looked at research programmes and being part of that for free? However if you dont ask you dont get. Since the condition is rare surely you are entitled to specialist treatment. I do think it will depend on how supportive your GP is. At first mine thought I should have gone to work the day after coming out of hospital after1 month. Couldnt walk, breathe or function as a human let alone work. My specialist wrote to him and since then he is very supportive to me

    Have your answers ready when they ask why you want one or to see one. how do you think you will benefit. Im just playing devils advocate but just be prepared for opposition. If you do, hopefully you wont need it.

    Go for it, there is nothing to lose

    All the best

    Nicola

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