Old 04-09-2018, 09:48 PM #1 (permalink)
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Default Will my legs ever get "quiet?"

For some time now, my legs have not stopped "getting my attention." It's difficult to explain, but I thought I would try, and maybe find out if anyone else has experiences or ideas about what's happening. (I'll be at Clinic in early May and will certainly go into it with the personnel there.)

My legs ache but are not painful. It's just that the sensations never stop if I am conscious. It honestly feels that the neurons (possibly) are trying extremely hard to send impulses to the leg muscles. I still can walk although I'm beginning to look like Frankenstein's monster lurching about! I don't see any twitching but seem to feel intense twitching deep inside the muscles (who knows what's going on).

My fear is that when these feelings stop, so will my muscles stop doing anything. As I said, this will be #1 at the next Clinic. Just wondering what others might have gone through.

Thanks. Hoping all had a good day.
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Old 04-09-2018, 10:00 PM #2 (permalink)
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Default Re: Will my legs ever get "quiet?"

I'm probably the wrong person to ask but I've had sensations in my legs since before my diagnosis. Besides the constant twitches, which can be seen on the bottoms of my feet and calves, I have pain, tingling, and burning in my legs, especially the lower part.

I've given up trying to figure out what's going on. I can still walk, too.
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Old 04-09-2018, 10:16 PM #3 (permalink)
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Default Re: Will my legs ever get "quiet?"

Not sure if you are UMN or LMN primarily- your description sounds like spasticity to me.


My leg spasticity causes my muscles to be at the forefront of my mind at all times, as you describe. If I am not thinking of them for a tiny moment, I will usually quickly become aware of them again because they are flexing and pulling and settling my feet into weird positions.

I don't know if you are taking any meds to reduce spasticity, but that might help with the constant muscle engagement/sensation. I recently started taking Dantrolene in addition to my regular spasticity med and it has drastically cut down on daytime pops, twitches and random flexing/extending as well.

I am still independently mobile- sometimes a stagger, but more of a shamble. Spasticity can actually help folks with LMN issues by providing a sort of stiff legged stability- something to consider if you want to take something for it and find yourself suddenly wobbly. It's definitely something to discuss at your clinic.
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Old 04-09-2018, 10:23 PM #4 (permalink)
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Default Re: Will my legs ever get "quiet?"

My legs ache, mostly at night after Iíve been in bed several hours. It feels like lactic acid burn, of the sort I might get if I climbed a mountain. It can lead to cramps if I try to stretch too hard. My theory is that there are fewer viable neurons and the muscles are weaker, so only a seemingly small amount of activity causes the same sensation as climbing a mountain may have caused me pre-ALS. Itís also possible that the fasiculations are contributing to tiring out the muscles.
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Old 04-10-2018, 11:55 AM #5 (permalink)
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Default Re: Will my legs ever get "quiet?"

Karen,

Your theory makes sense to me. I just got back from my daily 10 minutes on the treadmill. There were two youngsters in their 20s in there and I though I should go more than 10 minutes. I got to 11 and it felt like I had climbed to the top of Mt. Everest. I usually have a pretty normal gain but I was staggering back to the condo. Five years ago I could have gone an hour on a steep incline and had the same feeling as I had today, only without the staggering on the way back.
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Old 04-16-2018, 03:13 PM #6 (permalink)
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Default Re: Will my legs ever get "quiet?"

I'm 3 years diagnosed and this last year i have had excruciating paint in my feet during sleep. Wakes me up with Hot, burning on the top of my feet and sometimes the toes. This usually sets off my long time "Restless Legs" and all that is very painful. Short term elevation and massage is only relieve. I take Baclavin for the Spazs
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Old 04-16-2018, 03:28 PM #7 (permalink)
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Default Re: Will my legs ever get "quiet?"

Peckso, do you also have peripheral neuropathy? Thatís what those symptoms sound like. I realize thatís not part of ALS, but PALS can get other things just like anybody can. If so, Gabapentin may be worth a try. Also, CBD cream and compounded PLO gel with NSAIDs and Gabapentin (the compounded gel would be a prescription).
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Old 04-25-2018, 04:49 PM #8 (permalink)
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Default Re: Will my legs ever get "quiet?"

Thank you.......I'll try that
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