Originally Posted by Unsure81

Hi there

I am so sorry you are going through this and "waiting game" is one thing we all definitely have in common!!

My symptoms started 9 years ago when I was also 23 - facial droop, eye droop followed by walking, breathing problems and general weakness. Like you I had an MRI, x-ray and every blood test going and all were normal. I was told it was in my head. Thankfully the symptoms improved after 2 years to mild, fluctuations until 4 months ago when it all came back with a vengeance and doesn't seem in any rush to go anywhere! I have had the same round of testing, all normal again but as Abby said - they only tested for AChR antibodies both times despite MG being suspected. This time I have been told "Functional Disorder" by the same neurologist I saw 9 years ago but my GP referred me to a Neuromuscular specialist as she said my facial weakness is certainly not imagined and thankfully the specialist agreed! I am now on a 2-3 month wait for Nerve and muscle tests and hoping for some answers!

I am definitely no athlete but I miss my regular exercise and nights out dancing.....and high heels - dresses are not the same without heels!! I am so sorry you are having to adjust your life to this illness - it is so hard and I am sure we all know how you feel, so one thing is for sure - you are not alone.

Good luck with the mestinon - I really hope it helps and you have some answers soon.....and if you do end up in the waiting game with some of us here, you are in good company and have our support and complete understanding - which isn't always the easiest to find in your family and friends if they are struggling to get their head around this