Maybe change to come...

[Clearwater AL]

I received and Email from someone who is tremendously involved in the ALS/PLS fields. I have copied a portion of his Email to me which I have posted below. I really don't have his permission to publish his name to this statement but here it is...

PLS is on the spectrum of MND. We are trying as a community of researchers to stop saying ALS is a single disease….it is not. Some versions are primary upper, some lower, some with dementia, and some without, etc, etc. It is going to take a bit, but I think that most in the field suspect that a therapeutic for classic ALS may in fact help mitigate the aggressive nature of PLS as well.

 

[Mike in Maine]

Not really sure what that is saying, I’m just an ole Sailor. Someone want to interpret

 

[Clearwater AL]

I guess those in the research field of ALS feel more than ever before that PLS is really a form of ALS, not being so rare, but one of the forms of ALS...it's been a questionable subject. "Therapeutic" I think means "treatment" and "Mitigate" means to "make". I think

Some large accredited hospital (maybe more than one) declared that PLS is a form of ALS.
Again, before that it must have been an on going debate. I think it still is in some circles. I've written before that even calling ALS rare, very rare, PLS even rarer could actually work against those trying to raise money for ALS. Just my (opinion)... I think the numbers of those being diagnosed with ALS is climbing. Many other diseases, just 25 years ago, once considered rare (like Alzheimers) are no longer considered rare.

Many foundations, organizations and etc. that contribute money tend to push it to the diseases with substantial numbers. Anywhooo... who knows what tomorrow will bring.

 

[olly]

What it means is that there has always been a broad spectrum regarding MND.......ALS (amyotrophic lateral sclerosis),PLS (primary lateral sclerosis)PBP(progressive bulbar palsy )and SMA(spinal muscular atrophy) plus a few other sub-types.

There has always been a question mark regarding PLS being a benign form of ALS....I personally feel it is the case.
Some countries or neurologist don't believe PLS exists as a sole disease but class it as benign als or here in uk both are classed as MND.

PLS has no chance of any brake through treatment or cure on its own unless it comes from HSP(hereditary spastic paraplegia)research.
Any such brake through with ALS would have to include the umn 's as well as the lmn's....as its the lmn's degenerating that causes death in ALS I would think reaserch is targeting that area as its main priority.

For PLS ,HSP research is what we should be aware of mainly.

 

[FSHolbrook]

I am not really sure that this is very earth shaking ALS is clearly on a single disease if it was then it is very likely they would have found how to stop it. I am thinking that there is so much researchers do not know neuro muscular disease it could fill many volumes.

 

[Clearwater AL]

And... the little thought I often hear in my head when I read about research is, "Yea, and these researchers ain't doin' this for free. Hmmm..." But, maybe one will discover something while they are being well paid to do "research." (Gee...I wonder how you start a research company?)

 

[Clearwater AL]

Well, I was wrong...again. I've been informed some of the men and women doing research contribute their off time to research projects. To save my butt on this one a little bit... I still wonder about some of these Foundations, Institutes and "cure" studies though.
Maybe one with honest intention will find the break through discovery.

 

[billbell52]

My neuro treats PLS as a distinct disease from ALS. They are both MNDs but what causes PLS appears to be distinct from what causes ALS. All ALS patients have TDP-43 involvement while PLS have none or minimal. I am still hopeful that an ALS cure applies to PLS.