I have the same situation where I live in Europe. Shopping around is not an option unless I go abroad and then a seronegative diagnosis is invalid when I get back home again!

There are no private MG specialists and yes there are neuromuscular specialists - but only at the public hospitals and all need referrals. They are mostly satisfied that if you have seen a neurologist at your local hospital then that is enough, and only that neurologist can refer you further to another hospital where you risk to be turned away based on the information in that referral. A local private neurologist told me my hospital really should refer me to one of the 2 public hospitals in the country with MG experience. But that will all depend on my first proper MG related neuro appointment in 5 years of symptoms which will be in March at the local hospital.

I don´t know how people deal with all this extra MG ´paperwork´, it´s like running your own business on top of everything else. 2 years ago I couldn´t have managed any of this.

I TOTALLY understand about treading carefully with adding new symptoms into the mix - you feel like you are sometimes ´using up´ your chances when there are few private alternatives or you are too sick to travel far.

Those new symptoms shouldn´t be left out, wild_cat, and might even give an exceptionally good doctor an exceptionally good clue towards your diagnosis if you could only somehow find one - and somehow you will

I admit I am feeling quite well but have resorted to using creative and alternative methods in obtaining the support I might need in the near future....

I decided to initiate contact directly with the one professor & MG specialist in my country by email and almost fell off my chair when I got an answer within 20 minutes of writing! I also found out that he believes a negative SFEMG does not rule out MG. That is real hope! I am over the moon to have gotten responses to a few of my questions - this surely can only happen in a small country! I have proceeded carefully & respectfully with this new opportunity and once again feel confident & equipped to do this well precisely because of having been on a forum like this one!


Anacrusis