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Wend
8th June 2018, 21:09
Hi, I was diagnosed just last Friday and was too dazed to ask all the questions, but a letter arrived today from my neurologist, stating that I am stage 2 MND and meet the El Escorial criteria for ALS.
What does this mean for my prognosis? I am losing control over my legs, but seem to be fine as far as speech and swallowing are concerned. Thanks, Wend

Ellie
8th June 2018, 21:36
Hi Wend,

MND Connect are off until Monday, but in the meantime...

Stage 2 means there are 2 regions involved in your ALS, that's all. It doesn't really equate to a prognosis.

There are 5 stages on that scale, but they are rather blunt and don't allow for any nuance.

Nobody can give you a prognosis, especially at your early stage. (I was told Xmas 2008 would probably be my last :p )

The letter itself might come in handy for Terminal Illness claims etc., but otherwise, don't worry about it!!

Love Ellie.

Terry
8th June 2018, 21:50
Hi Wend;

I to was given 2 or 3 years to live over 8 years ago but I thought it would be longer as the EMG person said a bit about things to me.

I have known so many Mnd people first hand and the vast majority have lived life quite well for a lot longer than expected.

Love Terry

Wend
9th June 2018, 14:06
Oh! Gosh Ellie, thank you - that really helps! You're a star :o) xx

Wend
9th June 2018, 14:06
Thanks Terry - I am up for the fight!
x

Deb
9th June 2018, 16:32
Thank you Ellie and Terry .. Your comments really helped me too today too.
Like you Wend I am up for the fight !

I had a hospital appointment this week and they reiterated that the speed of progression is impossible to predict because everyone is different.

However, the way I am crashing when I am reversing my mobility scooter could be equally dangerous, I am going to slow down !

Thanks again
Love Debbie x

Terry
9th June 2018, 17:13
Hi Debbie and sorry I Wend,

Don't fight, just live life the bestist you can. Accept help in any form and try to smile.

Be careful of slopes and curbs as these can cause you to fall off.

Love your Terry

Boiler68
10th June 2018, 02:34
Hi, I was diagnosed just last Friday and was too dazed to ask all the questions, but a letter arrived today from my neurologist, stating that I am stage 2 MND and meet the El Escorial criteria for ALS.
What does this mean for my prognosis? I am losing control over my legs, but seem to be fine as far as speech and swallowing are concerned. Thanks, Wend

Hi Wend

Just to reinforce what Ellie and Terry have said and to add that my husband was diagnosed in 2008 although symptoms were there 2 years before so we are in our 12th year now. Arms very weak now, speech slurred but not unintelligible, can still walk with assistance but uses powerchair mostly. He has had periods of slow progression but it has plateaued for long periods too. Our youngest was just 6 but he has seen her grow into a lovely young lady of almost 17 now. Lots to be thankful for. Life has changed and you just have to go with it but try to keep positive thoughts. He sets himself challenges every day and tries to keep busy. Hope you have good support around you. Plan ahead for things you may need..we were told to sort the bucket list in 2008....we're still here so best wishes to you. I hope this has given you a little encouragement

Boiler68

Caroljohn177
10th June 2018, 08:24
Morning Terry

How are you?

Following on from your chaat with Ellie, I was never told how long I have. Also I have PLS, is there a chance I could have some ALS too? When diagnosed I was told any changes would happen in the first 3 months. Can changes still happen?

Best Wishes
Carol

njm
10th June 2018, 11:16
our diagnosis suggests a long slow road ahead. I think you need to think positive now. PLS can and normally is a very slow long journey and can allow many years of great life ahead.
charles

njm
10th June 2018, 11:31
That should read Your diagnosis................

Ellie
10th June 2018, 12:02
Charles, there's an 'Edit Post' tab under your post if you want to correct your typo.

Ellie
10th June 2018, 12:27
Hi Carol,
I posted this on another thread, which might be helpful for you…

“The way to think of ALS is that of a spectrum involving motor neurons - Lower & Upper Motor Neuron (LMN & UMN) involvement/damage give rise to our symptoms and rate of progression.

For example, one can have UMN Dominant ALS, i.e. not much LMN involvement or LMN Dominant ALS, i.e. not much UMN involvement.

Those with pure UMN involvement are categorised as having PLS and those with LMN only have PMA.

However, things sometimes change and motor neuron involvement can mean some people may converge towards 'typical' ALS, i.e. significant LMN & UMN involvement.”

PSL has no time frame in which it could change to, eg, an UMN Dominant ALS, so I wonder if the Neuro will be just checking for changes in 3 months maybe? It’s not true that any change to a PLS diagnosis will happen in 3 months – or 3 years, for that matter!!

Love Ellie.

Terry
10th June 2018, 13:21
Hi Carol;

Ellie puts it quite well.

Diagnosing any Mnd is quite hard, so to give you a type and to semi confirm it, they will probably keep monitoring you every 3 or 4 months for a while. Pure PLS is not common but if your progression is classed as slow then that's as good as it gets. Peoples progression normally seams to go in jumps but that that might not be the case it is more that you notice some things at the same time or that you are very tired.

Love Terry

njm
10th June 2018, 13:24
Thanks Prof. I am the last of the Luddites.

Charles

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