Old 09-09-2015, 04:58 PM #1 (permalink)
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Default Leg progression question

Three years ago I got up from my office chair and twisted my left ankle. It was a very bad injury and the doctor thought it was a break, but the x-ray showed it wasn't. I hobbled on crutches and a brace until I could walk again. It never fully recovered but was stiff. I still had strength in it. I fell once more a year later but didn't attribute it to the "bad" leg because there was a large crack in the sidewalk.

Last Summer was when I started getting cramps and fasciculations in my left foot. The twitches because constant in November and have continued to be constant to date. The twitches spread to my calf in the left leg and I get them in my left glute and sometimes in my thigh. Just recently I noticed them on my right leg but not constant.

My question is why am I getting sensory feelings that are odd on my left leg. It almost feels like tingling. At first I thought it was muscle loss and my sciatic nerve. I can see the twitches in my foot and calf but it seems like when I touch my calf, the twitches worsen and I also get a tingling sensation. Lumbar and t-spine MRIs normal.

I always thought the twitches came after the muscle was almost gone. I can still stand on my toes and heels in my weak leg but it's harder and I get muscle fatigue in both legs.

I know everyone progresses differently. I was just wondering if anyone had the same pattern and wondering if one day I'll wake up and not be able to walk on my left leg.
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Old 09-09-2015, 05:09 PM #2 (permalink)
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Default Re: Leg progression question

I think twitch patterns vary widely I was weak first then had fairly spectacular twitching until I started riluzole. But the muscle is still not completely gone. It sounds as if you are a bit away from not walking if you don't fall. Do you have an afo? I love mine
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Old 09-12-2015, 06:50 AM #3 (permalink)
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Default Re: Leg progression question

Kim, I wish I had a fantastic answer for you, but I don't sorry.
I get lots of twitches in my bad lag, but none at all in my good leg (left leg).
I've been told my left side is going the same as my right, and I have started to get spasms occasionally, but that's it.
My favourite saying is 'I'm trying to not read anything into...'
All the best with getting answers.
God bless, Janelle x
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Old 09-13-2015, 12:10 AM #4 (permalink)
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Default Re: Leg progression question

Hi, Kim.

Going through some of your past posts, I remember that you always talked of twitches and sensory symptoms. I must have missed the reason "why" you were diagnosed with ALS. Have you never had any paralysis? I would never pretend to second guess your doctors: no doubt Dr Boylan is correct. But I just missed it if you have any paralysis yet.

From what I have read of your posts, I would be surprised if you suddenly woke up and couldn't walk on your left leg, as you put it.

As Nikki suggests, a custom-made AFO might be a real help.
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Old 09-13-2015, 04:35 PM #5 (permalink)
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Default Re: Leg progression question

Twitches and sensory abnormal feelings are typical of ALS. My left leg felt so weird--I can't explain the sensation. The fasciculations or twitches are a constant with ALS, at least for most people, I understand. They are annoying, and are constant reminders of the disease progressing throughout our bodies. I try not to think about them, or focus on them, too much. Paralysis happens fairly gradually. You won't suddenly wake up one day and not be able to walk. Instead, you get weaker over time, and your leg(s) get heavier, until finally it's safer and easier to be in a wheelchair. One thing at a time. If I had been told I'd be in a wheelchair within a few months of my diagnosis, I would have despaired. But, when it happened that the leg paralysis prevented walking any more, I adjusted to being in a wheelchair. Life is still good. I can still do many things, and enjoy so much. I think you will too, Kim. Most of us do.
- Charlene
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Old 09-13-2015, 09:47 PM #6 (permalink)
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Default Re: Leg progression question

Quote:
Originally Posted by Atsugi View Post
Hi, Kim.

Going through some of your past posts, I remember that you always talked of twitches and sensory symptoms. I must have missed the reason "why" you were diagnosed with ALS. Have you never had any paralysis? I would never pretend to second guess your doctors: no doubt Dr Boylan is correct. But I just missed it if you have any paralysis yet.

From what I have read of your posts, I would be surprised if you suddenly woke up and couldn't walk on your left leg, as you put it.

As Nikki suggests, a custom-made AFO might be a real help.
EMG, muscle wasting, weakness. Mike, I do not have paralysis. My symptoms seem to be like Charlene's. My legs feel very heavy when I walk and it's getting harder to walk on my toes and heels, especially with the left leg (where it all started.) I've gained 10 pounds since December but my legs have not picked up any inches (my left thigh lost 1/2 inch). It all went to the middle despite my high protein intake.

The first visit I presented with twitches in my left foot only, brisk reflexes, and an abnormal EMG that showed widespread chronic and a small amount of active denervation but no clinical weakness. That was back in December.

Now the twitches are in many places but primarily on my left side, including my face. It makes it worse that I have torn rotator cuffs and the sprained ankle that never really got back to normal. The doctors were very surprised that my MRIs of spine were normal because I do and have had a lot of pain.
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Old 09-13-2015, 11:04 PM #7 (permalink)
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Default Re: Leg progression question

Thanks, Kim.
What an interesting presentation. I'm not a doctor, but I would think yours would be a slow progression. Thanks for the education.
--Mike
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Old 09-13-2015, 11:10 PM #8 (permalink)
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Default Re: Leg progression question

Kim, my husband had fasiculations all over his body before he noticed any weakness. He was very strong, so I can only assume that he'd lost some muscles but still had enough that he didn't notice. He was doing a lot of physical work on our home and just assumed that age and over-work were catching up to him. Eventually the fasculations settled down to his legs (they were the first to go) and now they're very active in his arms. They've stopped on his chest and back for now. Unfortuantely there doesn't seem to be a consistent pattern, so I'm not sure that anyone else's experience can help you predict what's coming next.

To quote Forrest Gump, ALS is "like a box of chocolate, you never know what you're gonna get".
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