UMN Dominant ALS

[Geo]

As stated before Amyotrophic Lateral Sclerosis ALS is detected on an EMG . This is the Gold Standard for detection, No Denervation No ALS
In Neuromuscular Junction Diseases Such as MG Myasthenia Gravis and others Acetacholine Receptors are affected . You can have all of those symptoms in PLS as well as ALS (spasticity,Clonus ,ETC ETC . The EMG seperates ALSers from PLSers as long as you have good ones which most wait 5 yrs. I know this for a fact i started with UMD . But my EMGs came back normal for 5 yrs. If i was a Doctor i would not give my patient a diagnosis of ALS before doing a EMG and confirming it . I had this done to me ,i know .

 

[Big Mike]

Hi Geo,

UMN dominant als is als. Just a different variant of the disease. As you said, PLS patients do not show activity on the emg, so therefore they do not have LMN activity and don't have als (assuming pls is not a very slow variant of als). You can certainly have clonus, spasiticity, and brisk reflexes with LMN activity, but it is more prominent in UMN dominant cases and PLS. UMN dominant patients like myself have LMN activity and progression but at a generally slower pace than the classical cases.

Mike

 

[tdamess]

ok now i am confused more so about different types but, do they all have the same outcome ?

 

[olly]

bigmike is spot on with his answer.
geo is also right,a emg determines if it is pls or als.

i do know some diagnosed with pls who do have minimal atrophy,i too have a bit.
i think it all depends on the neuro,some may think a diagnosed of als is not warranted with slight atrophy.
i have hypotonia (lmn)in my left lower leg but it does not concern my neuro too much.
i did toil about having a emg a while back but decided not to bother as any possible lmn i could have does not seem to be progressing very much.

pls turning to als is a very touchy subject for pls'ers,on a pls forum they have had many heated discussions on this exact subject.

tdamess, it can be confusing sometimes and we dont always conform to typical progression............but i believe progression is more important than the exact subtype of mnd.

 

[Geo]

Right on Mike . When a disease is not Cured you have Many Mutations of the same disease . Like ALS, People refer to PLS as a Variant of ALS . I thinking Mutation is a better word as i beleive its a Viral Connnected Disease . and this is why no cure

 

[Zaphoon]

I'm told I have PLS but I also have benign fasciculations and frozen shoulders wtih muscle atrophy. The doc says that the PLS could be somewhat causetory in the frozen shoulder business I have. Pretty weird!

Zaphoon

 

[Big Mike]

There seems to be a gray area between pls and als that is not always readily identified. Certainly, I can understand why PLSers would be upset upon potentially being eventually diagnosed with als, but either way it would still be a slow progression it would seem.

 

[Big Mike]

bigmike is spot on with his answer.
geo is also right,a emg determines if it is pls or als.

i do know some diagnosed with pls who do have minimal atrophy,i too have a bit.
i think it all depends on the neuro,some may think a diagnosed of als is not warranted with slight atrophy.
i have hypotonia (lmn)in my left lower leg but it does not concern my neuro too much.
i did toil about having a emg a while back but decided not to bother as any possible lmn i could have does not seem to be progressing very much.

pls turning to als is a very touchy subject for pls'ers,on a pls forum they have had many heated discussions on this exact subject.

tdamess, it can be confusing sometimes and we dont always conform to typical progression............but i believe progression is more important than the exact subtype of mnd.

Yes, oily, progression of any mnd disease, whether it be als or pls, is what ultimately matters. There are als patients with neither UMN dominant form or PLS that progress slowly as well. I am pleased at this point that my muscle atrophy is so slow to develop. Hopefully that will continue to be the case. :grin:

 

[hopingforcure]

Olly and big Mike and other's, I believe we can have a ton of variants of this darn disease. I do not think that we even can begin to realize what flavors this thing comes in. I tell you the more I learn about this disease the less I know. Just when I think I know what will happen to someone, well then someone else is different. Someone today who can run marathon's got an ALS diagnosed. yet others are down and out quickly after diagnosed. Not many diseases that are that hard to figure out. I have read thousands, and probably thousands, of MND info and still get conflicting info daily, so what the heck does that tell us.. We are really the ones who understand it most. Wish the doc's would ALL realize that.

 

[Geo]

Do you realize ,if they even acknowledge this ,what this does to them . This makes them look like Fools . Nothing worse than an errogant person coming out with egg on there face . But then there are some who arent errogant and really want to have something happen ,but are afraid of admitting they dont know . Picture if you will your at work and can not figure out a problem .Now your going to tell your boss you dont know ? I doubt this will happen . This is where the real problem is . Errogant people who will not admit they have made an Error . Shame is People Die . Time for the people who should know to ask the people who have it . And Listen to what they have to say and just maybe act on it . I just wish one of them had enough Guts to come on here and take the heat . Geo

 

[Big Mike]

Frustrating

The problems with als and motor neuron disease in general, is that there could be numerous causes for it, which combined with genetic predispositions, could cause a ton of different variants. I read somwhere there could be 14 different variants of als. And what one treatment could work for some patients may not work for others and vice-versa. :-(

 

[Big Mike]

Do you realize ,if they even acknowledge this ,what this does to them . This makes them look like Fools . Nothing worse than an errogant person coming out with egg on there face . But then there are some who arent errogant and really want to have something happen ,but are afraid of admitting they dont know . Picture if you will your at work and can not figure out a problem .Now your going to tell your boss you dont know ? I doubt this will happen . This is where the real problem is . Errogant people who will not admit they have made an Error . Shame is People Die . Time for the people who should know to ask the people who have it . And Listen to what they have to say and just maybe act on it . I just wish one of them had enough Guts to come on here and take the heat . Geo

A big part of the problem, I believe, is a lack of synergy. I believe it will ultimately take a combination of molecular and cellular treatments to truly defeat MND, which would include drug cocktails, gene therapy, and stem cell therapy. And all three intertwine. But as long as you have als researchers that believe stem cell therapy or gene therapy is just a panacea, we aren't going to see the teamwork among researchers that we so desperately need. And, of course, money is always a problem as well.

 

[Geo]

Mike Mike Mike . What have i been saying all a long ,most of these people are Drones . You know what a Drone does ,Only what its told These people cannot and will not think on their own . We Dont encourage that in our work Place today ,if you do you could get Fired . I was not one of those ,you can problably tell ,im very Outspoken and was at my Job . I always worked for someone else and was Very Very Well liked by my customers of which if i moved Companies they Moved with me . If i quit someone i would simply call them and say im moving to another Company ,thaught i would let you know . This crap of Wanting you to be a Professional is BS,they want Drones . Just Shut your Mouth and do what your told . Nothing can be accomplished in this manner ,This is how we defeated Hitler ,he thaught he was omnitipitous
He was wrong . When you do Business like this you have a Stagnet Company that never really does much . When you encourage Open Debate you have a healthy Work Enviroment . This is why this Forum is good , you can choose or not choose to listen or not ,But everyone has an Input . Geo

 

[GlenBrittle]

Mike Mike Mike . BLAH BLAH BLAH blah blah Blah,
This is why this Forum is good , blah blah blah ,But everyone has an Input . Geo

Sorry Geo , after that setup , I could not resist !

You are right about the drones. They are everywhere, and so much fun to mess with.

Glen

 

[BLPhill]

Hi All,

So, to further confuse things, I have been DX with UMN dominate ALS. My first two DX was PLS. Two separate als specialists, one not knowing about the other.

I have had 2 EMG'S, neither have shown denervation or reinnervation. However, I have atrophy in left leg and arm but relatively slight. If I point it out it will be noticed. yes I have faciculations.

The DRS are basing this on rate of progression. I am still walking with a walker, but getting more difficult. My speech is very slurred and getting worse with each passing day.

The neuro I have chosen to see says probable UMN ALS. She said she will not give a diagnosed of PLS at this time.

The ALS specialist says a PLS form of ALS. What is that? I have no idea. I have had this for 3 years.

Betty