[Don Povey]

I find the doctors and consultants very unhelpful and evasive at times regarding information of any sort to do with MND. I have had numerous tests as we all have, with very little in the way of information, I’ve had to pry, prod and generally do my own research to move forward.
They either are not confident in their job or are withholding information I feel, very very frustrating.
If there really is no information then why not be upfront and say so!. When you come away from a consultation and feel that you’re no further forward or have nothing to work on it’s frustrating in the extreme.

[Don Povey]

This is a typical story for ALS sufferers. Because there is no particular test for ALS they have exhaust every other possibility before they come to the ultimate conclusion. Your journey is not uncommon but quite the reverse. I shared your journey and never ending questions with no answers and countless hours on the internet with again, no answers.
The frustration is phenomenal especially, in my case, I feel so well and capable inside.
You are not alone buddy.