an interesting and enlightening read. must have been so frustrating to be mis-diagnosed for so long.

Wow. I have never heard of these but just wow. Thank you for sharing!

I hope admitting I've got some involvement with the medical lot and that I've heard of this condition once or twice before doesn't lose me too much credibility - but I'd never known anything except textbooks on genetics... hearing it directly from someone is very, very different. I dunno, I kinda figure that there's a lot more to a person than just genes, and so this kinda hits home. I guess what I want to say is; thanks for sharing - it opens people's eyes that little bit more, myself included

Having had to deal with being mis-diagnosed several times for an affliction I have I can understand how you must have felt.

The fact you haven't let your condition, (is that the right term? I'm never sure how to refer to these sort of things without sounding either patronising or insulting) warp you and turn you into a bitter, angry person says a lot about your strength of character.

As for friends not willing to deal with your problems, well if they're not willing to take the bad with the good then they're not friends in the first place. I know all too well about feeling isolated too.

Wow, that's an impressive post in multiple ways! Thanks for sharing!

Checked a bit of the info and googled it in German...

Personally a simple cold can drive me up the walls but on the other hand I have a rare kind of migraine

and most of the time I donnot even think about it even as it can knock me out cold! LOL!

...am lucky, it has not happened for years.