How many PLS'ers are on the forum?

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ShiftKicker

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Just checking in to see how many of the active forum members have been diagnosed with PLS or are on the pathway to a PLS diagnosis. It has the reputation of being rare, but in my internet travels, there seem to be more out there than I would have guessed. There seem to be only a few active on this forum- PLS has some unique issues and sometimes it feels inappropriate to post on the general forum.
 
That makes two of us. Anyone else?
 
G'day!
Apparently I have PLS.
Fiona, I pretty much post wherever. I just don't offer suggestions etc to ALS members. Just support really. Glad I do, they are all beautiful people (yes Bigmark, even you :grin::grin::grin: ) and we may have more longevity but I still feel connected to everyone.

God bless, Janelle x
 
Me too, I meet my care team today, hoping to get a lot of good information.... I am over the hump I think .. Finally told family and friends and its a real load of our backs, ppl have offered so much help so my husband can continue working. Someone has to pay the bills.
 
I am active and have had Bulbar PLS since 2003. Generally they won't declare it PLS for 5 years from initial symptoms although some doctors will do it earlier. There is greater than a 90% chance ALS lower motor neuron symptoms will show up within 5 years. My doctor declared mine PLS after 2 years since Bulbar ALS progresses rapidly and I was still walking fine.

It is estimated there are around 1000-1500 people with PLS in the US. Around 50 people get it a year and the average life span for PLS patients is 20 years. You generally don't die from PLS. Since the percentage is so low there is some variation in the statistics. A fair number of people get diagnosed with PLS and are later rediagnosed with ALS.
 
I just had my ALS Clinic visit yesterday. I asked my neuro point blank, do I have ALS or PLS? He him-hawed a bit, but said PLS. I asked for another EMG, but he said since my last one (1.5 years ago) didn't show LMN involvement another wasn't necessary. So I guess I'm still a PLSer (for now). TB
 
Count me in, too, at least for now. I think my chart says ALS with a secondary diagnosis of PLS. Like Billbell, I have the bulbar presentation and would probably no longer be here if I had ALS, as I was diagnosed 8/11. My progression was pretty fast from 2009 thru 2011, but has slowed down. There's been no major changes in the last couple of years.
 
I'm in. Since 2009. Use a rollator and have zero balance. Affecting arms/hands somewhat and speech/saliva. I can't tell if it's progressing quickly or not. I think the walking progression has stopped. Hopefully. Much worse and I'll be in a power chair.
 
Ive only been dealing with this for a few months husband was diagnosed but they diagnosed him with ALS not PLS so what is PLS?
 
In PLS, the upper motor neurons are affected, leading to spasticity, stiffness, loss of balance and the like.

In ALS like your husband has, both the upper and lower motor neurons are affected, meaning more muscle weakness and atrophy than PLS, more breathing problems as the disease progresses, and a shorter life overall.

If you use the "Search" link to catch up on things before you post general questions, people here who struggle with the time/ability to read and respond will appreciate it.
 
Hi Laurie, to add to your explanation... PLS only affects the voluntary muscles where ALS eventually affects the involuntary muscles such as the diaphragm. Maybe you can add a more extensive descriptive so folks will better understand the difference.
 
Yup, thanks, Al, actually working on a sticky around a more comprehensive explanation/comparison w/ UMND and typical ALS. That was the sound bite version, for sure.

Best,
Laurie
 
I was diagnosed with PLS initially, but I could be moving into ALS. I've had symptoms since 2009. But I can hardly walk or use my hands now.
 
...ALS eventually affects the involuntary muscles such as the diaphragm. ...


I don't see support for this. Source?

See my lengthy post with references, below.
 
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In my wife's case, her breathing never really stopped, but was incredibly shallow at the end. Although she was totally locked in, with no eye movement possible, her shallow breathing continued, barely discernable.



I found these explanations:


The main respiratory muscles are under both voluntary and involuntary (automatic) control. These two control systems come from separate sites in the CNS and have separate descending pathways.


Neural regulation of respiration. - PubMed - NCBI


The breathing muscles are controlled automatically from the brainstem during normal breathing but can also be controlled voluntarily from the motor cortex.


https://www.neura.edu.au/research/p...ary-and-involuntary-control-human-breathing-1


Humans can breathe automatically (automatic breathing), e.g., during sleep, whereas breathing can be controlled voluntarily when needed (voluntary breathing), such as singing and speech. Automatic breathing is believed to originate in the brain stem via the pontomedullary respiratory oscillator. A descending bulbospinal projection from the oscillator synapses with the spinal cord anterior horn cells with rhythmic projections to the respiratory muscles to cause automatic breathing. The oscillator could function automatically without any peripheral feedback and responds to changes only in pH and Pco2.


In contrast, cortical inputs are required during voluntary breathing. Spinal motor neurons receive corticospinal inputs originating from a discrete region of the motor cortex,


Voluntary Breathing Influences Corticospinal Excitability of Nonrespiratory Finger Muscles


There are three types of muscles: cardiac, smooth, and skeletal.
Cardiac muscles are only in the heart. Skeletal muscles are voluntary. Smooth muscles are automatic (except the diaphragm, which is both voluntary and involuntary.)


Smooth muscles are found in many different locations throughout the body, such as the iris of the eye, the walls of arteries, surrounding the small intestine and stomach. Generally, smooth muscles are also involuntary. An exception to this is the diaphragm, a smooth muscle that regulates breathing, which can be consciously controlled, but generally functions without the individual’s notice. Smooth muscles are not striated. The functions of smooth muscles are as varied as their locations. These muscles regulate blood flow, move food through the digestive system, and even change the angle of hair follicles to maintain body temperature.


Biology Laboratory Manual | Muscles
 
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