Stages of MND

[LindaB]

I had a recent virtual consultation with my MND Consultant. I have received his letter today. He describes my diagnosis as Stage 4 MND
To me that sounds like the final stage however this doesn't really give me a timescale. I don't know if there is such a thing.
I've been reluctant to research as I'm prone to catastrophizing...

I suppose my question is can someone be at stage 4 (whatever that means) and continue at that stage for some time?

I'm writing on the basis that there's no such thing as a silly question...but as I write I do feel somewhat dim😏

I assume there are forum members at the same stage....anyway just putting it out there😉

[matthew55]

I think he is irresponsible. 👌😁🤗😍xx

[LindaB]

matthew55 however if that's his clinical view....

I know I could direct my question to him...but just wondered about staging in general?

For me Im walking albeit slow and with a stick....eating/drinking....self caring again slowly...voice weak...NIV overnight.

[matthew55]

Well if you're level 4 I must be level 10. 😎😁🤗😘xx

[Suefromwakey]

Linda I didn't know anything of stages, never been mentioned here, seeing as everyone is different and they have no idea of timescales, or so it seems, how can they say what stage anyone is at?

[Lynne K]

Linda, I too don’t know anything about numbered stages. That has never been mentioned to me. I’ve been using my powered wheelchair in the flat but again this afternoon wobbled to the loo with my walker. Xx

[LindaB]

Well there are definitely numbered stages....however how useful that is to know might be questionable I suppose.

[Mary C]

LindaB
Hi Linda, like you I hang on every word consultant says about my condition.It then could become a source of anxiety and ruin your day.After diagnosis when I was referred to the hospice I had a dickie fit as I thought that meant I was near the end of life.( obviously not as that was 18 months ago).


Never heard of stages..

You could write and ask him for explanation if it’s bothering you OR ignore it !It sounds like you are managing pretty well right now so maybe take each day as it comes.
Try not to let this staging thing get to you but recognise in certain cancers there is a staging system.
MND seems to be rapid,slow and everything in between.

Best wishes
Maryxx

[Ellie]

I assume there are forum members at the same stage.

I've been in Stage 4 since 2011 😏 😘😘

[Ellie]

Well if you're level 4 I must be level 10.

You're probably a 3 or a 4, but fear not, there are only 5 stages 😏😘😘

[Deb]

Hi LindaB . I'm sorry that this has upset you. Its totally understandable, it would have worried me too.

I'm no expert but I've never heard of different numbered stages. My consultant says no one can predict the rate of progression or where MND might hit next. I wouldn't want to know anyway as my way of coping is to try and take one day at a time. It might be burying my head in the sand but I'm sure we all have different coping strategies.

I always feel worried about appointments because a remark can upset us but if you are concerned I would ask for an explanation.
Love and hugs,
Debbie x😘🤗

[Rosemary6NT]

LindaB Being totally ignorant I did a little reading and gather that this is the "King's method" of staging MND based on the neurological regions involved. But as the symptoms vary in order of appearance and severity for each individual I don't see how it can be predictive of survival. Stage 4 seems to indicate nutritional or respiratory symptoms. I think Ellie puts it nicely, stage 4 can last a long time

[LindaB]

Thanks to all for your replies.

Deb I didn't feel it upsetting just wondered if it could mean yes stage whatever but this could be any amount of time...which Ellie summed up succinctly😘

Mary C yes I will shelve that thought and not lose sleep over it🤗

Rosemary6NT thanks for looking and replying😉

Suefromwakey through a series of questions the consultant identified stages...for example I was asked can you lie flat....asked about choking....turning in bed etc etc

Lynne K probably not something useful to know anyway 😘

@Matthew55 stage 10 you've dropped off the cliff😂😂🤗

[Ellie]

To me that sounds like the final stage however this doesn't really give me a timescale.

The Staging scale isn't really rating survival but, if the Consultant is only now categorising you, well that seems to be unkind as, had you known about the Staging Scale from Stage 1, being 'suddenly' told you're a 4, has a shock value for sure. Seeing it in black and white in a letter with your on it must be 10x worse than being told face to face.

It's kind of the same as knowing the '2-5 years' typical survival duration, without applying it to ourselves... 🤗🤗😚😚

[LindaB]

Ellie thanks for that....I won't dwell on it....I felt reassured by your post😘