It all started 3 years ago when I had pneumonia and a stroke, shortly after I noticed that my jaw would not stop tremoring,I had right side weakness and my face had started to droop on one side, it also started to pull on the other side.My swallowing started to play up and I lost my voice for weeks at a time. I went to see a neurologist and he thought that I had MG he sent me to Oxford to see the neurologist but he said no not MG, I was taken off the pyrodistimine tablets which worked.
By this time my hands had started to tremor and I was have head nodding when I woke up and after eating food. I went back to my neurologist and he said that he didn't know what was wrong and sent me back to my GP as he could do a better job in treating me then he could(GP very good).
2 years on and my tremor is now through out my body,I have facial drooping when I get tired, my muscles tire very quickly and I'm unable to walk any distances,I can not swallow food and I have to drink fortisips 5 times a day (video scan of neck shows extreme muscle contraction on trying to swallow medium to thick liquids). I have stopped breathing twice due to the neck muscles contracting and have been admitted into hospital with breathing and swallowing problems. The only drug that releases my muscles is lorazepan 0.5mg given over 24 hours.
I recently was sent to sheffield to see a neurologist he talked to me and did a brief examination and said that I have FND caused by pneumonia. He wants to send me to a psychotherapist which to be honest I'm not very keen on seeing as I know when my problems started. The neurologist could not explain some of my symptoms like restless legs and why I tremor in my sleep is so violent that me and my wife now sleep in separate beds.
My GP has been saying for years that he thinks that I have 2 problems and one is MS, but with no positive mri nor blood test no neurologist will except this.
Over the last three years my quality of life has got worse I am unable to cook due to the tremors and cannot be left on my own as my breathing can change at any time, I find that my symptoms change from hour to hour, I am unable to go out on my own as I cannot walk very far and when I use my wheel chair my arms tire quickly.