Number 7

[SAMMY88]

Hi all, About a week after my diagnosis in August I phoned the MNDA helpline , still in shock and crying down the phone the kind lady asked for my address so she could forward my details to my local MNDA. I started with I live at number 7, she interrupted with oh thats a lucky number to live at. Well I quickly replied not for me......then I bursted out laughing 😆. I wonder if she told her work colleagues about her flippant comment 🤔 🤭😂 it still makes me laugh 2 months later. Swings and roundabouts with this MND 😬

[Ellie]

SAMMY88 Did you ever get transferred to a specialist MND Care Centre and get your 2nd opinion, Sammy?

I hope you did as it's almost November... xx

[Zante]

Can I ask does everyone automatically hear from their local mnda person? I had my details forwarded to them back in June by my local mnd services coordinator but have never heard from anyone?

Am sure she was a bit embarrassed at the quick response she gave you without thinking! Easily done. 😁

[SAMMY88]

Ellie, No Ellie I still haven't heard back about my 2nd opinion or being transferred to a specialist MND centre. I have sent a couple of emails requesting an update.

[SAMMY88]

Zante , I heard back from my local MNDA the same week. I would definitely ring them again.

[Zante]

SAMMY88 did you have the private neurology appointment that you asked for some recommendations? You mentioned mmn specialist?

Am not sure if my area has a local mnda rep so will make enquiries. I get the newsletter thumbprint and raffle tickets too!

[Ellie]

I have sent a couple of emails requesting an update.

Sigh, that's frustrating - keep on chasing them, even though you shouldn't have to...

Have you started taking Riluzole? xx

[SAMMY88]

Zante I would of thought all areas have a mnda rep/ coordinator 🤔

No I didn't bother going for a private neurologist appointment in the end. I have more progression in my limbs recently so I'm not holding out for a small chance that it's mmn. The fact that the neurologist hasn't set up a second opinion shows they have already made their minds up.

[SAMMY88]

Ellie, I turned down the offer of Riluzole, on the day of the diagnosis due to being in a state.

[Zante]

SAMMY88 I think on all the medical Nice guidelines everyone's entitled to a second opinion on the NHS? I was offered one after diagnosis. You should be able to get your gp to refer you for one. Or consultant.

[SAMMY88]

Zante, unfortunately my gp refusing to help me. Both my neurologist and gp passing the buck so to speak. Since my diagnosis I haven't seen anyone, no one returns my calls. For my own piece of mind now I have stepped back from chasing the nhs endlessly . I sent a few emails last week but no more phone calls.