So many people.

[Stevedp]

Seen by OT then signed off. Seen by physio given equipment then signed off. Seen neurologist sent for MRI, done not had any further update yet. Started Riluzole just sorting out blood tests with GP. Lung function test booked for 31st 👍. Left leg feeling tight in the thigh when standing up right starting to feel the same. Sleeping OK no headaches no weight loss so cracking on. Gp is my first point of contact but everyone whose seen me has given me their contact number.

[denise]

Gp doesn't tend to be useful, well not here anyway.

Get a diary and put everything in. Who you spoke to and anything useful you can refer back to. Its handy and it stops your head clogging up trying to recall everything.

😘

[Madge]

I have a diary but forget to write in it … it’s always I will do later 😜 the moral is … don’t forget to write in it even the smallest of things.

[JamesW]

Don’t worry Steve you’ll soon get used to who is more useful to you and for what particular thing 👍

It does take time to get used to and you are bombarded at first but as others have suggested keep a diary and a contact book.

[Stevedp]

Thank you peeps

[Ellie]

Seen neurologist sent for MRI, done not had any further update yet.

🤔 Why the need for an MRI, Steve, if you don't mind me asking. xx

[Stevedp]

Ellie they wanted to be able to discount other spinal issues I have L2 L3 degenerative disc disorder. Also checking the entire nervous system I was in the MRI scanner for 1hr 20mins. Wrecked I was couldn't get me self off the bed had the technician help..

[Ellie]

One would have hoped that every other possible cause before dropping the bombshell of an MND diagnosis...

I was in the MRI scanner for 1hr 20mins. Wrecked I was couldn't get me self off the bed had the technician help..

That'll teach them 😁😁

[Arcadian]

One would have hoped that every other possible cause before dropping the bombshell of an MND diagnosis...


That'll teach them 😁😁

Similar situation for myself, until the diagnostics for other causes stopped.
Hence frustrations around having an 'interim diagnosis' for several months and not in any medical support structure until a couple of weeks ago, when reviewed and now pending MDT support.

[Ellie]

Similar situation for myself, until the diagnostics for other causes stopped.
Hence frustrations around having an 'interim diagnosis' for several months ...

A very frustrating paradox for sure. Hope that MDT support materialises asap. xx