Originally Posted by rach73

Hi Everyone,

I thought I would just update you on how my appointment went today as you have all been rooting for me.

Ok firstly I still don't have a diagnosis but the Prof is heavily leaning towards Seronegative MG. My SFEMG was negative again today. However the Prof said thats not uncommon in patients with seronegative MG. I have had bloods taken and its being tested by Angela Vincents team, using the new very sensitive tests they have for people with seronegative MG. They claim its identifies up to 95% (of those previous 20% on the normal achr test) as positive for mg. However should I still test negative for this its not the end of the road. He would be keen to do a plasma exchange, should I improve after the plasma exchange that would be positive proof of seronegative MG.

Hes writing to my GP and hospital Consultant (should be interesting as they have both told me mestinon doesn't objectively work for me and they are 100% convinced I dont have MG).

The only condition mentioned throughout the consult was seronegative mg.

Obviously with Christmas being next week (still can't believe that!) then the new year this will slow everything down.

I managed to stay calm and in control throughout the appointment.

Very pleased with how it went. He wants me to send him a copy of my tensilon test video - eyebrows raised when he found out that I had responded for 5 mins with improved speech and 1 min plus for my eye opening.

Happy even though there will be a wait.

I apologise in advance for spelling mistakes its 1145pm! But I just can't settle to sleep.

Love
Rach