Hi Tillie...well...
The first bloke we saw was "quite" sure I may just be unlucky and have a lesion in the wrong spot, hence the progressive weakness/stiffness.
He sent me to another bloke, Matthew Kiernan, who is a world expert on MND (he won the Forbes Norris Award 2014 which is for MND stuff). I had to do another EMG on both legs and arms, then they put this 'thing' on my head which sent electric type pulses through my body to check reactions. Cutting edge stuff I was told.
Please forgive me, I really don't know all the correct lingo and I'm still absolutely exhausted from it all.
He seems to think it could be Mills Syndrome, which was described in 1900 by some bloke Mills. Matthew (he actually insisted we call him by his Christian name) said there's only ever been 11 cases of it...ever.
There's a little out there to read but not much...from what I can gather it's a rare form of PLS.
They took a heap of blood as I agreed to be part of some research to see why MND in any form happens. Glad to be useful.
I also have to return to Sydney in 6 months time to repeat all the tests and have a few more. They have this you beaut machine for PET scans apparently.
I obviously had my heart set on 'Why yes, Janelle, you definitely have PLS. Go home and enjoy the wonderful things each day rewards us with...' Did NOT expect to go back to square one and a half!
So, I'm slightly deflated from the experience. Building oneself up over important matters is not always a good thing. It may take me a few days to lose the depressed feeling and pick myself up and get on with it. Prayers please.
Mind you, it was WONDERFUL to see my big brother!
God Bless, Janelle x