Hi juliejayne,
Just to inform you that I referred you to "soniapos" whom I know from an other site (www.myasthenie.com in french!) but she told me that you were already in contact.
I hope the best for you,
Maurice.

I am so sorry JulieJayne....I am in the UK and your struggle has similarities to my own so I feel your frustration and despair!! :(

I'm not sure how your medical system works....is your GP able...and would he be willing to refer you out of area (if you feel able to travel)? Could you pay privately to see someone for another opinion?? I have paid in the past and found I feel more comfortable that way, (though I know many people feel you should not have to pay) I have found when you are personally paying for their time sometimes they listen and take more time with you and are not so confined to clinic lists and timings!!

And, also (just to rant!!), how is it that Doctors can happily say with confidence that response to medication is placebo effect with no tangible evidence but that the visible symptoms staring them in the face are the result of "nothing being wrong"???? It is well known that tests only show so much and every day new tests are developed....MG itself has antibodies which cannot be commercially tested for yet so how can they discount MG on the current, incomplete testing when there are teats they don't have yet?? It's like trying to fit someone into a nice, neat box that they haven't even finished making yet?!?!

Will be thinking of you and hoping you have some good news soon!! :hug:

Special thanks to Annie, Maurice and Unsure, and to everyone else on this forum.

Yes Maurice I have been in touch with Sonia. She is always helpful, like Annie is.

Unsure, yes the GP has already referred me out of area, the last Neuro I saw was in an MG specialist centre in Leiden... so much for that. Paying to go private is sadly not an option financially. And following on your rant, which I fully endorse, what really bugs me is that I haven't even been tested for MusK, LEMS, B12 deficiency, and probably for a heap of other possibilities.