Mee diagnosis ?

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After talking with someone who has been diagnoised with Me ive become very confuesed and upset, i have been ill for around 18 month i beleave i have ME after doing research of my symtoms i have had a MRI that was clear and had some blood tests though i dont know what for i was told they where routein tests as far as i know they where clear for a long time i was made to beleave it was all in my head , aftert changing doctors i have been sent to a ME clinic but there is a years waiting list, i was under the beleaf that the Me clinic was where i would get diagnoised but im now told that not true, and useulay your not sent to the clinic entill you have had a diagnoisis , im so lost and confuesed , have i already been diagnoised? , who diagnoises? how? , please someone tell me who i need to see to get diagnosed , why arent the doctors helping me 

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  • Posted

    Lots of patients have had similar experiences. The trouble is that ME is largely a diagnosis of exclusion, and also a diagnosis likely to be given to those who suffer from a range of different problems. Doctors are often a bit uncomfortable with this, and patients confused by it. Is there any particular reason you need a diagnosis? If it is just for your own understanding, then having and ME diagnosis may not give you more information on where you stand than just having 'suspected ME'.

    Sorry this is difficult for you. It's confusing for everyone I'm afraid, including doctors.

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  • Posted

    Its a very frustrating condition and I too was annoyed that doctors seem powerless to help. I got diagnosed and was pointed in the direction of a specialist CFS nurse. My GP kept telling me to pace, the nurse kept telling me to pace and i ignored them all. 

    Recently I decided to take their advice and I am well on the road to recovery. For me, there is no magic pill to make you better. It was all down to me and teaching my body to become active again. 

    best of luck bit don't expect the clinic will solve your problem overnight

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  • Posted

    Yikes! It is very confusing to know how to navigate the medical system with this illness. I'm in the U.S. But I believe that no matter where you are, the best specialists to diagnose you are either an infectious disease doctor or a rheumatologist. They will know what bloodwork to do to rule out other illnesses. This must be done before a diagnosis of ME/CFS is confirmed. It's a shame that so many of us have to go through this medical maze before we're diagnosed. By the way, it's not all in your head. That's simply a statement made by arrogant and ignorant doctors.
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  • Posted

    Hi Sian- I'm sorry you are going through this. I too had similar issues and it took months to be diagnosed. Ask your GP to refer you to either neurologist or rheumatologist who will do further tests to illuminate other illness's. Good luck x
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