How does PLS progress?

[Mike in Maine]

Everywhere I look, I can never find anything that talks about how PLS truly progresses. I’m a good number of years into this, symptoms really started to show in 09, but looking back I can identify things that now I go, yea that’s PLS years before 09. Right now my major symptoms are serve spasticity, joint pain, very bad muscle fatigue, very bad general fatigue, cramping and emotional issues (many other minor issues). Seems other issues get amplified see my post below about being sick (bad week). What is the end game, how does PLS progress from here? If this doesn’t turn into ALS (I pray nightly it doesn’t), anyway I think/hope I’m past that point, what happens in the out years? Those of you that have been at this for a while; what is going on with you? As, I have PLS, said in a post awhile back ”I hate PLS”, it wouldn’t be so bad if I knew what to expect. I know sounds like a bunch of whining, but I really need answers. At least if I know I’ll feel like I have some control, right now it feels like I’m in a batting cage with a blindfold on, I have no idea of what, when, where or how they are coming at me, just swinging away. Do you all get to feeling this way?

Mike

 

[old dog]

Mike - That's a difficult question, because no one has a good answer. My timeline is about the same as yours. In 2009, I still thought my problem was a bad back and went to physical therapy. Midway through 2010 I realized something was terribly wrong, but still thought the problem was coming from my back. I did ask my primary care doctor if it could be ALS. My father and grandfather had both lost the use of their legs late in life, but neither had been diagnosed with ALS/PLS. My father's diagnosis was lumbar stenosis, and my grandfather was thought to have suffered a series of strokes.

My father's symptoms appeared at age 66 after a severe auto accident (hit by a train). He had a serious head injury and was either unconscious or semi-conscious for nine days. He recovered and was able to walk with a cane or a walking stick for several years. Then his condition gradually deteriorated until he was wheel chair bound the last two or three years of his life that ended at 87. He never required oxygen on a regular basis or was unable to eat. His official cause of death was pancreatic cancer. He had PLS-type symptoms of emotional liability, spasticity, and voice changes, although very little swallowing difficulty. I have no proof he had PLS, but find it uncanny that some of the things I do are so similar to his problems. I even sound like him when I cough.

I, too, look back and remember things such as dragging my right foot, general body stiffness (lack of flexibility), involuntary pursing of lips, and cramps in the rib cage that were most likely early symptoms. I share most of the problems you have and, in addition, have lost my ability to speak. That alone drives me nuts. I cannot do anything in the way of physical work. However, I remain somewhat optimistic when thinking about my father's progression. My breathing seems to be okay, and I can still eat nearly everything, although very slowly.

 

[billbell52]

I have been following PLS for awhile. Progression varies widely. Some people only need a walker after 20 years and some people need a power wheelchair after a few years. I have Bulbar PLS (started with speech) and my speech degraded over 2 years. I had walking difficulty after 4 years and was in scooter after 6-7 years. PLS doesn't turn into ALS. ALS can present as PLS during the early years. That is why they wait up to 5 years to declare it PLS.

 

[bigmark1954]

I, too, look back and remember things such as dragging my right foot, general body stiffness (lack of flexibility), involuntary pursing of lips, and cramps in the rib cage that were most likely early symptoms. I share most of the problems you have and, in addition, have lost my ability to speak. That alone drives me nuts. I cannot do anything in the way of physical work. However, I remain somewhat optimistic when thinking about my father's progression. My breathing seems to be okay, and I can still eat nearly everything, although very slowly.

Very interesting symptoms Old Dog.......I had exactly the same symptoms as you listed in the beginning. I also had bad muscle cramping in arms, legs, and abdomen. I am still breathing on my own, and can eat slowly almost anything.
I wonder if PLS peeps have dirty EMG's etc?

 

[old dog]

My one and only EMG showed no lower motor neuron involvement. But it somehow confirmed the diagnosis of PLS. The official diagnosis was made by a young doctor who was a recent Harvard graduate. She did not explain what she saw in the EMG results that led to her conclusion. The department head at the ALS Clinic where I receive treatment administered the EMG and had observed some of my symptoms, including emotional liability. Towards the end of a lengthy appointment, I got tired and had an uncontrollable giggling fit.

 

[Mike in Maine]

Mark,
In all of my EMG’s (3 of them) I’ve had a little deviation on my left leg this is going always back to 09, but nothing the doctors have gotten excited about. I think the clean EMG with the UMN involvement points toward PLS.


Old Dog

Mike

 

[Mike in Maine]

Old Dog,
Agree with what you saying, I can go back many years and find indicators, like going up the ladders in the deck house on the carrier, after a few flights my legs would be killing me and this was in 03/04. Thought it was my legs were just tried from running, but I know the feeling to well now. It was the PLS. I can still speak, can’t project like I could, but at least folks can still understand me. I do have trouble swallowing some foods and have to take it a little slower when eating, but can still eat most anything.

Mike

 

[IhavePLS]

Mike, you've echoed my sentiments about all of this -- precisely. And you're clearly not whining -- you're asking, because you want answers.

I imagine that I've had symptoms of PLS, Mike, beginning in 2002 --- I was diagnosed in late 2010, reconfirmed last July, 2013.

To be honest, "what got me here" is so complicated that even I could not possibly know where to begin....my history has been clouded by two back surgeries and placement of a spinal stimulator. I now believe that my surgical low back problems -- I had herniated disks -- and failed back surgery syndrome went on to mask what were actually the earliest years of my PLS. It was a year after my last surgery (June, 2009) -- when I had a fusion with hardware from L3 to S1 -- that my neurosurgeon said to me those dark words that will never cease to reverberate for me: "Mike, you need to see a neurologist."

And so here I am....

 

[Mike in Maine]

Mike
I can echo what your saying, in 09 had my neck fusion done with hardware (C4-C7), the whole time the nerosurgeon keep saying, there is something esle going on, I don't what but something esle. Little did I know!



Mike

 

[IhavePLS]

Mike, precisely! My wife recalls a neurosurgeon commenting on how "GREAT!" he thought my knee reflexes to be.....this way back in 2006.

Uh-huh. Having "great" reflexes is not always a "great" thing to have.........................doctor!

Mike