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Joined
Jun 25, 2010
Messages
13
Reason
DX UMND/PLS
Diagnosis
5/2010
Country
US
State
New York
City
Silver Creek
In the last month I've gone from being able to walk a mile or 2 every day to barely being able to walk at all! It's like night & day! As I look back, I've been experiencing symptoms of PLS for about 2 years now, but I wasn't diagnosed until the end of may 2010. I know that everyones progression is different. However, I am wondering how others have progressed. How long was it for you once you started to have symptoms until you couldn't walk without a cane or walker? Also, how long once you started to have symptoms until your speech started to get really bad? I get worried that I may have ALS instead of PLS, except the 2 EMG's I've had were normal! Thanks for your help in advance!
 
I really don't mean to alarm you, so take this with a large grain of salt, but that seems like a very rapid progression. Maybe it will relent a bit in the future?

It took me about 6 years to go from a noticeable limp to needing a cane/wheelchair. PLS has not impacted my speech yet.

Are you taking LDN yet? I've been on it for about 2.5 years now, and though I can't prove it, I'm certain it has slowed the progress of my PLS.

-Jim
 
I started an unusual gait about 20 years ago. No one could figure out why all the sudden it seems that I was falling and could no longer kick a ball (I was a soccer coach for 16 years). I was always tense and had cramps...but these were dismissed as being out of shape since I wasn't running anymore. Its only been the past 5 years or so that things have progressed to the point of me needing a wheel chair for when there is alot of walking to do. Especially when I need to get somewhere in a hurry...like at the airport. I was using a cane till 2 months ago when my wrist tendons got injured from the cane itself. I am now sporting a cast on the opposite hand for torn ligaments in my thumb from trying to open a jar. The orthopedic doc said I have muscle wasting by the thumb of my left hand (which was the first to get injured).
I have the tongue twitches and speech that slows down and gets difficult to control my tongue when I am stressed or tired. I have noticed other places that look like muscle wasting but have not addressed it yet with my doc.

Its good that your emg's are coming out good. I hope you can find something to slow down your progression.
 
AK mom..you sound like me...except I don't get tongue twitches. I have muscle wasting in hand but that was from carpal tunnel. Yes, the speech slows down when I get stressed. Wow, it's only been 9 years since I had my first symptom.
 
Trapped in myself....well it came on all of a sudden for me. I couldn't get up from squatting position, started falling, then walked slow and stiff gait, had much anxiety at the time and that just caused it to get worse. Until I got my confidence back through a good physical therapist, it was bad, I fell all of the time. I can now walk without a cane if it's short distances and the weather is warm. Otherwise, I use a cane sometimes or wheelchair for long journeys. Good days and bad days..hat what it amounts to. Only two things cause symptoms to excerbate....cold and anxiety. I take both out of my life. Keep ahead of muscle weakness and stay warm...you'll be much better. I go to physical therapy every year. Also, I don't have pain. LDN..tried that...with no success. Sometimes I find that sheer determination and the will do stay ahead of the disease helps me.
 
Progression speed is crazily individual, and it changes with no warning.

I would like to encourage you, though. My progression jumped into freefall a year ago, from a typical superslow, insidious progression to what the PLM site graphs as the average ALS progression. When that first happened, I was very worried that it had converted over to ALS, but that didn't happen. Although I have lost the ability to sit up, hold my head up, gained dysphagia and dysarthria (swallow and speech problems), and can't stop from drooling at the end of the day, all in one year, I have no LMN symptoms. The symptoms are firmly rooted in my upper motor neurons, even with the speedy progression.

And at any time at all, all this progression could hit the brakes and leave me here for decades, plateaud. There is always hope that tommorow won't bring as much loss as today or yesterday did.
 
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