Welcome to the neurotalk family. Im sure there will be lots of people here that will be able to help answer your questions.

I will answer what I can.

I came home from work one day after feeling rough for about a week to find my eyebrow had dropped and my eye had closed. Initially that was the only symptom I had. Over the next few months I developed weak arms and legs. I had to wait around 9 months for a diagnosis (12 months after that the diagnosis was removed, its a long long story LOL). I saw a neurologist at that point who diagnosed ocular myasthenia.I was given mestinon.

Over the space of 7 months I developed more problems and mestinon alone wasn't helping an awful lot. My arms became so weak couldn't hold the hairdryer or change a duvet. Legs became weak after standing for 10mins. In June 2008 developed breathing problems and was hospitalised. I couldn't walk at this point. I was put on steroids and within three days I was feeling fantastic. But the effects soon wore off.

As I was now not having much response to steroids and mestinon I was sent for a second opinion and that hospital decided I had ME not MG. I was taken off the steroids (tapering slowly). As soon as I reduced the steroids my symptoms became much worse. I had double vision, choked on own saliva, had bouts of not being able to swallow. Strength reduced in arms and legs.

I still take mestinon, but no steroids. I use oxygen at home and now I can not support myself sitting up in a chair for longer than about an hour. Im still waiting for a diagnosis.

So as you see, I started at the head and then my symptoms moved down. I think only occular MG ( affects eyes) that hasn't become generalised after 3 years is the only one where symptoms dont spread. Occular MG should not be diagnosed unless patient has gone 3 years without symptoms progressing.

Ive not heard of anyone who has got better that hasn't been on drugs. People do go into remission with MG and it can be spontaneous, thats what all of us want.

Im sure that other peoples posts will make more sense than mine! I shouldn't post when Im this wacked.

I hope this helps

Rach