Symptoms of PLS

Seattle PLS

New member
Joined
Oct 19, 2020
Messages
3
Reason
DX UMND/PLS
Diagnosis
10/2015
Country
US
State
WA
City
Seattle
Hi, checking if anyone else has symptoms of PLS that include complete loss of ability to move legs and arms, loss of grip. Result is complete inability to dress, bathe, toilet, sit, stand or walk. Thanks in advance.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,332
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Seattle PLS, welcome to the forum- and sorry for the reason you are here.
While this section of the forum can be quiet, I believe there are quite a few folk with PLS who visit here regularly. I am hoping you get a few answers, but it might take a couple days.

~F
 

rmt

Active member
Joined
Sep 18, 2019
Messages
30
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
Hi Seattle PLS. My husband is currently diagnosed with probably PLS but it has only been 2.5 years so he could still transition to ALS. He only has bulbar symptoms so far. We are keeping a close watch on his limbs but so far he doesn't have any limb symptoms.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,921
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Seattle, my guess would be that "PLS" has transitioned to ALS, as is frequently the case and can reportedly occur as late as 10-25 years after onset. Weakness and atrophy are minimal at worst in PLS, since only the upper motor neurons are affected. The extent of disability that you are describing would be associated with ALS rather than PLS.

If the EMG were repeated, it would likely show lower motor neuron damage this time. So this would be a good time to start tracking or keep reassessing breathing and swallowing, to consider BiPAP, a modified diet, and a feeding tube, if/as they are needed and agreed. I am assuming there is now a wheelchair, hospital bed and patient lift in use.

Best,
Laurie
 

morleyde

Member
Joined
Apr 4, 2018
Messages
27
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
Seattle PLS,

"Complete loss" dos not sound like PLS. Spasticity, slowness of movement, and even weakness is typical of PLS, but not complete loss. I agree with previous posters that an EMG would help determine what is going on. I have PLS, but am not a medical professional.
 

Seattle PLS

New member
Joined
Oct 19, 2020
Messages
3
Reason
DX UMND/PLS
Diagnosis
10/2015
Country
US
State
WA
City
Seattle
Thanks to all of you for your replies. Very helpful information.
 

billbell52

Distinguished member
Joined
Feb 1, 2010
Messages
224
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
City
Garland
You don't mention how long you have hd symptoms. PLS can easily be confused with Upper Motor Neuron ALS during the early years. Usually before year 4-5 Lower Motor Neuron (LMN) symptoms appear. PLS is an extremely RARE disease. ALS is 100 times more likely. Bulbar PLS is a rare form of PLS and can be diagnosed after 2 years. Bulbar ALS is very aggressive and you are near death after 2 years. PLS is also a slow progressing disease. From your description it doesn't sound like PLS.
 

Seattle PLS

New member
Joined
Oct 19, 2020
Messages
3
Reason
DX UMND/PLS
Diagnosis
10/2015
Country
US
State
WA
City
Seattle
Hi everyone, symptoms started in 2013 timeframe and I official diagnosis of PLS came in 2016. Mostly not being able to walk very well, now can't even stand or use arms at all.
 
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