Diagnosis revision?

[Lynne K]

Hi Andy, I’m glad that you’ve been told that you have the PMA variant of MND. Correct me if I’m wrong, but I think that it means that you have a lengthier prognosis than with other versions. My understanding of what the electrical tests do is test the travel speed of the signals. My explanation is the idiots version (me and not you ) but Ellie have you the official description. Lynne

[Deb]

Hi Andy,

I was initially told I had the ALS varient of MND but was referred for a second opinion. After repeating the tests and a clinical examination the second neurologist said she could find no evidence at that time of Upper motor neurone involvement. This was nearly three years ago. She said it was flail leg ( I had visions of my legs flailing around !!!) MND but it could become ALS at any point. PMA was mentioned but it was a case of monitoring progression.

I was offered regular EMGs but I declined as I thought it is what it is and treatment would be the same anyway.

Hope you've settled well in your new home,
Love Debbie x

[Ellie]

Hi Andy,

Assessment of upper motor neuron signs is essentially clinical and involves testing reflexes and muscle spasticity. Abnormal findings are hyperreflexia (very brisk reflexes), a Babinski sign (reflex) and muscle resistance.

I am somewhat surprised you’d get an ALS diagnosis in King’s in the absence of UMN involvement, as that’s an important part of the diagnostic criteria 🤔

Anyhow, it is what it is, and happy that your progression remains slow and is not widespread.

Love Ellie.

[denise]

I don't see what difference a name makes. It's the same treatment I guess. I thought everyone had the electrical test I just presumed the areas that had a problem would react differently to the ones that don't.

[nunhead_man]

Good morning and thank you all

Billy – this is in fact my 3rd electrical test having had two when I was 1st diagnosed – this is the new neurologist getting to know me.

Matthew and Barry– Thank you I do take every day for whatever I can and agree that labels don't really matter and I really need to get into Doctor Pinto to work out what he based his decision upon other than simple observation.

[Barry52]

Hi Andy,

I am not aware of any new electrical test that defines upper or lower disease type but the news suggests a better prognosis. I’m sure that if your neurologist has found a new indicator he will share it with the MND community.

Best wishes,
Barry

[matthew55]

Personally I don't think that a label matters. Take every day for whatever you can and never think too far ahead. Stay Strong 👍

[billy106]

Andy a lot of Mnd sufferers usually have the electric test when being diagnosed. it does prove whats fully functional and what is not .

[nunhead_man]

Good morning all,

Having moved from London to Southampton (and hence Kings to Southampton Gen) my new neurologist has been checking me out to get to know who I am MND wise.

He commissioned a new electrical test and told me when we met on Monday that he is is placing me in the less common group of people they see with a pure lower motor neurone disorder, which they usually refer to as PMA (Progressive Muscular Atrophy).

I already knew that my development was quite slow so I guess this doesn't make much difference other than give what I have a name – or at least another name!

But I'm interested to know how the electrical test can distinguish between upper and lower neurone involvement – is there a explanation that would work for my simple mind?