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Vicky86
12th August 2019, 21:54
We’re told “probably MND” but then things seem stable for a long time and now they want to repeat the EMG tests

Should we have hope or not?

Ellie
13th August 2019, 15:25
That's a hard one to answer Vicky...

Given his initial "probable" diagnosis, the EMG test will show if your dad's MND has progressed into more areas of his body.

I don't know enough about your dad's symptoms or clinical status to give an opinion on if the EMG may be a re-evaluation test, but I do know that he is under the care of an excellecent team.

It's good to hear he's been stable for a while (but do read my reply to you re his new cough on another thread)

Take care.

Love Ellie.

Vicky86
13th August 2019, 16:11
Thanks Ellie

They’ve said they work on the basis of Hope & if it could be reversible they check for that I suppose. We don’t know what to think :(

Do you have regular checks EMG wise is that how it works with mnd?

You are amazing by the way how you use this forum and write so well 💪🏻💪🏻🤗

Ellie
13th August 2019, 16:26
No Vicky, for those of us with bog standard, definite ALS/MND, EMGs aren't repeated once diagnosed - there's no need nor anything to be gained by it.

For some people with probable diagnosis or an atypical progression path, they can be needed as part of the ongoing diagnostic process.

Wishing you both the best and thanks for your kind words.

Love Ellie.

Gillette
13th August 2019, 18:18
Hi Vicky,

Was it explained to you both that the diagnosis can be 'possible', 'probable' or 'definite'? I was given a 'possible' diagnosis in November 2018. In May 2019, my MND had progressed significantly but, according to the criteria for diagnosis, I am still a 'possible'.

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