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Eric2266

Member
Joined
May 13, 2014
Messages
10
Reason
PALS
Diagnosis
03/2014
Country
US
State
Ohio
City
Kent
So many discussions (pro and con) about the relationship between PLS and ALS. I am told PLS is "like", "in the same family as" and "similar to" ALS. I've been told that PLS is nothing like ALS . . . doesn't seem that way from my reading. So what say this group. I need to have an intelligent discussion with non-medical doctor types that make sense to them.

Will all of the "Ice Bucket" hubbub benefit us with PLS? I'm so confused.

Thanks for setting me straight.

Eric
 
Interesting question... Personally, I was told for years (actual years - 11 in fact) that my symptoms seemed like MS but my MRIs said "no." My symptoms do closely match the ones described on MS sites.

The "benign" ALS description begins to make sense as my muscles become weaker. But honestly, I don't think the doctors actually know where PLS fits in the neurological spectrum. I think trying to explain what is wrong with me is just basically pointless.

As for the Ice Bucket - raising money for more research can't be bad.

Anne
 
Primary lateral sclerosis is usually classified as a type of motor neuron disease with only UMN symptoms. Since progression is much slower and lifespan is significantly longer than ALS, some neurologists tend to say that it is nothing like ALS.

I however disagree with that view, since there is always screening for up to ten years to see that PLS and PMA does not evolve into ALS.

I firmly believe that the donations made from the ice bucket challenge and the awareness raised will benefit everyone with MND as well as their caregivers. The swedish ALS/PLS association has significantly higher donation rate already, I am very happy with this! And today I heard a father explaining to his kids what ALS is, it is a lot easier to live with MND if people around you know what you are dealing with.
 
Ok, I'm always reluctant to get into terminologies but here is the way it was explained to me.

The cell bodies (somas) of the Lower Motor Neurons are in the spinal cord. The cell bodies of the Upper Motor Neurons are in the brain. They (UMNs) control the message sent to the Lower Motor Neurons.

Being that BOTH involve Somas (and a few other things) that is why renown hospitals like John Hopkins accredited PLS as a form of ALS. Also... because numerous cases of PLS have morphed into ALS where as there is no known case of the opposite. A diagnosis of PLS may be considered somewhat of a blessing (I hate saying that) but... you ain't out of the woods entirely.
 
My doctor calls it a continuum with Full Blown ALS on one end and PLS on the other with everything else in the middle. As side note when I went to Boston’s ALS clinic they used the same terminology. They referred to things as a continuum. He calls it all ALS/MND. I think the money will help all.

Mike
 
One neurologist told me she didn't know much about PLS, and no one else does either. My present neurologist, who is with an ALS Clinic, tells me she cannot predict what the future holds for me. I'm a stubborn type, so tell myself my progression will be slow and my life span will not be shortened much. Like everyone else, I have days when I'm sick and tired of being unable to do anything and being a burden to family and friends, but I will continue the struggle.
 
Someone posted that PLS is a result of PTSS, according to their Neurologist.
A discussion on this is like "how much stress can you tolerate?"
We had a speaker at a company I was with who likened it to beans in a jar....finite, and when they are all gone, something bad happens
 
Kosmoskatten... has PLS ever been proven post mortem... through autopsy? Can ALS be proven positively post mortem?
 
Interesting question... Personally, I was told for years (actual years - 11 in fact) that my symptoms seemed like MS but my MRIs said "no." My symptoms do closely match the ones described on MS sites.

Hi Anne, your comment is interesting to me, because I've struggled with MS-like symptoms - and for a very long time as well. In my case, it is the periodic "flu-like symptoms" or the myalgia (which I know is not caused by other things -- such as the myalgia caused by one's being on a statin drug for cholesterol management) that I've experienced for several years. The muscle "tearing" sensations, the fatigue and malaise, and the bladder problems (and other) that are symptomatic of MS? I have them all -- every day.

I wonder what the connection is here (if any) between MS and PLS? I would love to know...

Kosmoskatten, in another thread, you mentioned dopamine deficiencies as being possible cause of RLS, PLS, and Parkinson's (makes sense to me, by the way!).....how do you think MS -- and its symptoms -- relate to PLS, if they do (i.e., might they have a common etiology)?

Mike
 
PLS and HSP do show up post-mortem, when they can slice the spine and look at it. That is when they can truly separate PLS and HSP from a "silent" Primary Progressive MS. PPMS attacks the sheath around the nerve, PLS/HSP microlesion the nerve within the sheath while leaving the sheat intact. (It is like a wire dying with the insulation looking just fine.)

I think Ice Bucket research will help PLS, as everything that happens in PLS also happens in ALS. I don't think it'll be as simple as 1:1, but I think it will be a jump ahead.
 
the biggest difference explained to me is that PLS does not affect the diaphragm muscle
 
Hey Bad Balance, so far they have not seen where PLS affects the diaphragm but there are just a hand full of cases questioning that. My breathing difficulties, as they were explained to me, involve the truncal muscles - intercostal muscles (between the the ribs) and the abdominal muscles (which assist the diaphragm under exertion) due to spasticity. Hard to put into proper words... if you're going to have breathing difficulties this is better than the other.
 
Clearwater AL - Did your ribs ever "burn"? That has been a pretty consistent complaint by my husband, and I have thought that it was spasticity of the intercostals as well.
 
Drewsmom,

I wouldn't say my ribs have a burning sensation but more like I'm wearing a real tight tee shirt. But... to press a finger in between my ribs is very sensitive. Hard to describe, not pain but "ouch!" Same for my abdominal and both thigh muscles. More so in the morning until I can get to my Baclofen.

I guess spasticity can be felt in many ways by different folks.
 
i believe that since PLS is a rare variant of ALS, that many post on this forum do not have PLS, or are confused about what they do have?
 
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