Hi,
Thanks again everyone for your kind responses. I will be completely honest and say I have been in the depths of despair today and your posts have lifted me greatly.
I have decided that I will contact Professor Vincent, however I need a few days to put together a decent email so I dont come across as hysterical!
I have had bloods done before, at Oxfors and other labs, the ach one and musk. All came back negative, as did RNS and SFEMG. However I did read a paper from Oxford that tested 44 patients with seropositive MG. Guess how many had a positive SFEMG? 11. Yes thats right 11. So how can that test be so accurate? If the tests for Myasthenia were so accurate why are they looking for new ones? No Dr has ever had a reply for that one.
Its awful, but Im glad Im not alone. My memory is pants but I want to say thanks for the post about Drs being the only profession that are rude to their clients and get paid for it.
I have found more support here in a day than I have in two years on another site. Thanks for your ideas and suggestions. Thank you also for sharing your personal experiences with a total stranger.
My mum visits this site and I know she has found your comments reassuring, especially when I was crying down the phone this afternoon due to sheer frustration!
The only way I can describe how I feel is that its like being in a glass bubble. People can see me but they don't hear me. Im hammering away on the glass but they dont want to know.
I think it was Annies post which expressed it, along the lines of they will kill you. Thats exactly how I feel. How ill do I need to get before someone takes some notice. I do worry that one day due to their ignorance I will die due to the mistakes they are making.
Its not acceptable to treat another human being in this way. Especially when your code of ethics state first do no harm.
Thank you, thank you, thank you,
Rach x
