Hi Everyone,

I just thought I would update you with some good news for a change!

I saw my consultant today and hes agreed to refer me to the national hospital for neurology and neurosurgery in London saying " he feels it would be good to get an opinion from some one who didn't know my case".

I went to the appointment after not taking mestinon since Saturday night as I wanted him to see me in a pretty bad way. I then offered to take mestinon in front of him and have him come back and see me in an hour. He said theres no need Ive never said that they dont work. I bit my tongue as he has told me "I could take them if they made me feel better as they are a stimulant". Also the last time I saw my GP he told me mestinon had never been objectively proven to work for me. So where was my GP getting the info from? So when I saw the consultant I couldn't support myself in my wheelchair or hold my head up. I had to sit with my head in my hands so that I could see him!

I took my husband with me as he had never met my consultant. Jamie explained eloquently and firmly, exactly what its like looking after me. How once I was slipping in and out of consciousness and he had to shovel mestinon down me, with my lips turning blue. My consultant was pretty shocked. He asked if we had oxygen at home. Obviously not, because everyone says I dont have breathing problems. He is now organising oxygen for me through the GP. Obviously I am aware that CPAP machine would be better but its an admittance that there is a problem. Which we have never had before.

He told Jamie if he couldn't cope and I was bad he must call an ambulance. A member of the general public shouldn't be put in that situation. I said thats all well and good but they dont do anything when Im here and treat me like a time waster.

I provided him with a little light reading ! Two academic studies one on seronegative patients and sfemg from 2003 and another on the problems of how data on the effectiveness of tests for MG is incorrect, due to the way the studies had been carried out. Plus the MGFA Health care providers manual, which I had sent from the USA. He promised me faithfully that he would read them.

Today there was no fobbing off or dismissing me or mentioning Cortical Platisticity. We used the term "neurological disorder" which Im happy as a start.

But any how its good news for a change and I maybe able to put my passport away for the time being!

Love
Rach