hi gazzelle,
I can understand just how you feel and the frustration with the medics you are seeing where one says one thing and another says another, then they are changing their minds about the dx...it sends you crazy i know.
Please read my story 'can anybody help me please' and 'ive made a view point break through'..My story sounds similar to yours,
I too am now in what i believe is called a 'limbo state' without a sticking dx.
I have 3 lessions showing on mri scan that seem to have now pailed into insignificance from what neurologists are saying (or not saying) as they are 'still only 3' my neurologist said after a second mri was unchanged and my dx has gone from ms to fybromyalgia,even though my legs are heavy after a few minutes walking then i can't walk anymore, but no one is taking any notice of that really and i have been having awful symptoms.
I know just what you are going through so maybe we could keep each other posted.
I have been chasing a dx which had been doing my head in to say the least, but i have now decided i wont be letting the medics do that to me anymore and have found a much better way to be about all this. After all it is them who are making me and you feel worse in many ways, so dont allow them to get to you.
Calmly go about a little research so you know whats what and surround yourself with people that lift you up and not pull you down, that makes all the difference!
You are right to go with your gut instinct on to what you feel is wrong, as you are the one it is happening to, only you know how you feel,at some point the doctors/neurologists will get this too.
You seem like you have a good attitude and humour helps, you are not alone in this, I have had great comfort and support since posting on this site and that has given me strength in itself.
I realise getting a dx ends the wondering but that wont cure me in itself so i am searching out all that which will make me feel better, hey there may be something out there that will cure me!
Stay strong and positive
Much love and best wishes x