hi paul.
we all share some of the symptoms you have ,i can identify with a lot of them.
many come on here with "umn and/or lmn"symptoms and no diagnosed.
they can identify having similar problems and find comfort and support till they get there diagnosed.
so if we can help in anyway we are always here.
personally, i would ask to see your hospital file.
you have to go to your gp and it may take a few weeks plus i think theres a £10 fee.
i was going to do this some years ago as i felt they were not telling me everything,but my gp said they can ommit anything in your file that they feel may cause distress.
you have to be firm,we have a legal right to this information.
i totally understand what you mean about the neuro,s and the exams.
at my mnd clinic appointment a year ago the neuro there was not very nice.
he did a brisk exam and disregarded some of things my own neuro(a respected old proff)had noted.
my mum said he was just reading randomly from my notes and it was not making sense.
he even said that pls would show on a mri but my mri was normal!.
i got testimoneys from many with pls and some neuro,s saying mri,s of those with pls are normal and sent them to him.
well lets just say from his reply letter he was not happy being proved wrong and shown up. i dont care,i was not having a jumped up imbocile treating me like a idiot.
my neuro after following my progression for some years and ruling things out says it is pls/umn desease.
i have not been back to the mnd clinic and never will.
there are many others who have the same problems with neuro,s so you are not alone.
if we can make you feel better in yourself with support then please stay,i would hate to think of you out there alone with all this.
we are all in this together