Spasticity

[MES123]

I have been diagnosed with PLS. My gate is affected and my speech. However, to date, I have no spasticity. I have read that no spasticity likely means it's ALS and not PLS.
I was diagnosed in August with symtoms affecting speech now for 20 months.
Any thoughts?

 

[Tractor Boy]

Hello MES, I have also been diagnosed with PLS, and I am not an expert on the subject, but I can share my views. Mine started in 2008 with slurred speech and a raspy voice. I am now basically not understandable. It started affecting my gate in 2011 and has progressed (now) to using a walker and/or wheelchair 100%. I have pretty severe spasticity which I take Baclofen orally. Although my leg muscles are very weak, I have not (yet) experienced the severe muscle wasting (at least visually) associated with ALS. It think (not positive) both ALS and PLS patients can get spasticity. My EMGs have displayed my upper motor neurons are degenerating, but not the lower, which is the main difference between these disorders. Just sharing my story here, but each case is unique. Hope this helps and good luck!

Tractor

 

[IhavePLS]

MES, during my last visit to my neuro, he remarked that spasticity was absent.

BUT....I'm on baclofen, so the decreased tone he observed may have been related to the timing of meds. It's all a mystery to me -- even when the doc noted no measurable spasticity, my legs didn't share his insights.

I was first diagnosed with "progressive spastic paraparesis" - sx. began in both legs (pain, spasticity, weakness, legs felt like I was walking in sand). Now, I have considerable involvement -- both arms included, low back, neck, shoulders, hands -- you name it, I get spasms there.
Have neurological bladder (and related) too. Which is why I'm often reticent to leave the house.

 

[Clearwater AL]

MES123, your post is somewhat confusing. Your first Thread of 3/11/14 you indicated you were writing on behave of your wife and her initial symptoms. Your second Thread of 12/4/14 you posted a diagnosis of PLS. A confirmed diagnosis of PLS must meet a criteria (Pringle et al - Smith et al) of 3 to 5 years of neurological exclusion and observation.
(Have they given further attention to her Celiac disease?)

First, ALS is rare, PLS is a rare form of ALS. For most (90%), PLS starts with a leg, then the other, then the trunk, arms and finally speech. Generally there may be an abnormal EMG but not a direct indicator of ALS. So, if it starts with speech... that person has cornered the rare of the rarest. Even rarer would to be diagnosed in less than a year!

Just wondering.

 

[billbell52]

Since Bulbar ALS (starts with speech) almost always progresses quickly it would not be out of line to be diagnosed in 20 months. I was 2 years with Bulbar PLS. Also, Bulbar PLS progresses slowly down the body. I did not feel any leg spasticity for almost 5 years.

 

[Clearwater AL]

Bill, you are truly one of the rare cases of a very rare disease and in a weird fortunate way that you were diagnosed in 2005 and your progression is apparently slow. I'm not sure if MES123 is speaking for herself now being her husband first posted for her. Also confusing is saying that her/his gate is affected but has no spasticity. (?) As I understand it, spasticity is the hallmark of PLS which affects speech... and gate.

I hope everything is as good as good can be for you.

 

[IhavePLS]

Meant to say above that my neuro noted "decreased tone" at last visit -- and not "absence" of spasticity.

He should see me this morning....my legs are killin' me!