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Transferall to Dr Sarah Myhill

Hi, I'm nearly 20, had ME for 11 years, 6 months and my name is Rosalind Amor.

I have been transferred to a new Dr, Dr Sarah Myhill, since Dr Wights clinic closed along with all his other. She is redoing my Mitochondria tests because apparently Dr Wight, for some odd reason, didn't test them for everything possible.

We finally arranged for the district nurses to come last Tuesday to do blood tests for a few things my local drs should have done 11 years ago and worst of all my Mitochondria ATTP profile.

What frightens me is it showing up clear, no abnormalities. Know that sounds daft but I feel so sick whenever any suggestion is made there is nothing biologically wrong with me. Like trapped. And the thought I could have somehow prevented my past 11 bad years is devestating.

Its daft because I've already had some mitochondria tests which showed abnormalities. (See my blog for more details especially August, September and Oct ones http://rosalindamor-spaceofameguineapig.blogspot.com/). Dr Myhill wasn't even bothered about doing this test but my parents wanted me have it to kinda prove to me I was ill

I wish I was mentally ill, least then I'd have a condition. I hate this being niether

Comments

It is difficult to know how much you have lost over 11 years when you consider it was essentially because a physician did not take your well-being seriously. However, if you have a chance to get the testing, you may find out something that Dr. Myhill can address to get your future ignited. It is sad to hear someone wish for any mental illness condition to get help. Please be assured any physical mystery illness is far better than any mental health condition. Most people with a mental health diagnosis live limited and pressured lives much like we do, but once labeled, their hope is restricted and the treatment is the same with minimal results.....more Dr"s appointments & more Meds. Hang on to the hope that at some point someone will care enough to help us and that it will be affordable!
 
Rosa - I keep thinking how lucky you are for the transfer to Dr Myhill - one of very few who understands (as far as we know from all latest scientific findings) and treats her patients. I well know the aggrevation of negative testing and the knowledge that something should have been found and treated earlier. Stay with it - one of our best in the UK for ME. Years of experience.
 
Hi Rosa
Normal mito tests are in no way definitive -it could be lots of stuff other than mitos -
but dont worry, I think you've done well to get to Sarah - she's been treating me since may, and while I remain ill, I have seen improvements and its such a relief to have a doc who takes me seriously. A real, real shame Dr Wright has been driven out by the CBT obssessed British Medical establishment, he was one of my next moves to try and find out if I had Lyme/chronic viral infections. Good luck xxxx
 
ps if you are in the north west of the UK, which if Dr Wright was treating you I assume you are, another person I found good for assessment of ME status was Ray Perrin, who has been developing objective correlates of ME for years in terms of spinal health. He's in Prestwich
 

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Rosa Amor
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