ALS vs MND

[shelleynshaggy]

Okay, so what is the difference between the two? I sent an email to neuro's PA and her answer was, and I quote "I thought ALS was in the category of MND... you probably know more than me with your research!" Hello? Do I work for the friggin' dr? I can't find a clear answer that is why I asked. Jim's records state "ALS Syndrome" yet they filled out MND w/ FTD on my FLMA forms (any more abbreviations in one paragraph? -lol)

I am so mad and all the more happy for the referral to the ALS Clinic. Anyone else know the answer to this?:-x

 

[Moonmark]

Hi Shelley,

It seems that some researchers view MND/FTD as potentially a separate entity from ALS. This must be incredibly frustrating and infuriating for you and I am so sorry that you are dealing with this. This article touches upon the distinction somewhat, but it seems that the research around this is not that clear yet (from my reading, as an admittedly complete "layperson", with no expertise whatsoever, other than some experience as a healthcare writer.) Hopefully the experts at the ALS clinic can give you some answers to help you understand what is happening. I think there is also a rarer type of FTD that is part of movement disorders and not motor neuron disease- have they looked into that at all? Maybe that would explain your husband's negative EMGs in the face of all this. Again, I am just speculating based on some info that I have read.

I wonder if researchers will ultimately discover that ALS is actually a wide range of separate diseases, not one single illness. It just seems so odd that people of such varying ages are affected and the presentation and progression can be so different from one person to the next. But what do I know-- just a thought.

Maybe you have already read about all this, but here are a few interesting links:

Dementia in Motor Neuron Disease: eMedicine Neurology

Frontotemporal dementia - MayoClinic.com

Hang in there-

Sandra

 

[Zaphoon]

ALS is a motor neuron disease, the nurse was right in stating that.

There is upper motor neuron disease (i.e. Primary Lateral Sclerosis / PLS & Pseudobulbar palsy).

There is lower motor neuron disease (i.e. Progressive Muscular Atrophy / PMA & Progressive Bulbar Palsy).

Then you have ALS which is a compilation of both upper and lower motor neuron disease.

Brief but I hope it helps with your education in MND's.

Zaphoon

 

[Danijela]

In the UK, all of the above (PLS, ALS, PBP, PMA) are referred to as MND (umbrella term). When we talk about ALS in the UK we mean both upper and lower motor neuron involvement.

 

[shelleynshaggy]

Thanks for the information. It helps to bring a lot more clarity.

 

[Katie C]

Shelley... that's exactly the way it was explained to me: MND is the umbrella term, with ALS, PLS, etc being variations. And for an ALS diagnosis, there needs to be both upper and lower neuron involvement. I'm going to risk putting words in Shelley's mouth here... the FTD symptoms in both our husbands is amazingly similar! And the bulbar symptoms are quite similar, though Glen's are again further progressed. But Glen's emg was so bad they have avoided doing another one, his hands are now almost non functional, he cannot raise his left shoulder. And now his starting to show the beginnings of leg involvement. So it's hard to see the dissonance of similarities/differences and not wonder whether or not we're looking at the same disease.