Hi
Im new to the forum so I apologise if I cover old ground.
I will give you a brief run down of things so far....
In January 2007 I had ptosis of the right eye and a lot of fatigue. This was initially diagnosed as Bells Palsy.
As 2007 went on I noticed that my legs would shake with fatigue after 10-15mins of walking. My arms became so weak I struggled to blow dry my hair.
In August 2007 my mother came across a website that suggested placing ice on the area of weakness. As she lives an hour away from me she told me to put some ice on my eye and to ring her back if anything happened. Well did I get a shock for the first time in 8 months my eye opened. We found that this could be used as a diagnostic tool for MG. We went to my GP- took some ice and the GP gave me neostigimine bromide. I took 15mg and my eye opened 20mins later.
In October 2007 my hospital consultant diagnosed MG. I was put on mestinon 30mg 4 times a day. I had blood tests for all anti bodies and was negative. Had CT scan no Thyoma.
June 2008 hospitalised for breathing difficulties, so weak I could no longer walk.
October 2008 sent to Oxford- basically told by one dr I was depressed! 3 other Drs said I had a myasthenic syndrome. I had all the blood tests again and another SFEMG all negative. Yet Mestinon was controlling symptoms. Told to come off steroids.

Since January 2009 I have been admitted to the ER 4 times with breathing difficulties where oxygen levels fell below 88%. I now have double vision, blocked vision, ghosting, weakness and an elephant has parked itself on my chest. But apparently I dont have MG- although my symptoms are better when taking mestinon and detriorate when I dont!

Just recently I saw a breathing specialist and had to wear a pulse ox for 24 hrs. My oxygen levels on moving around were so low the dr said I was holding my breath! I must be pretty talented to hold my breath for two hours. I had spirometry done those came back normal- but your sat down for those. I now have to do a treadmill test- which will be fun when I struggle to walk somedays.

Anyway the Drs still dont think I have MG- but they dont know what else it is as Im negative for everything else. I have even had 4 MRIs and a lumbar puncture.

Im currently on Lamotrigine and Mestinon. I do sleep better on the lamotrigine, but its making my hair fall out!

Any words of encouragement of advice would be massively helpful. Sorry to drone on!

Kind Regards

Rach