Do all pALS have fasciculations all th time?

jethro

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do all pals have fasciculation all the period?
fasc. are (as far as i know) the only visible element which remind us that als is still here. correct me if i am wrong.
 
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KarenNWendyn

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fasc. are (as far as i know) the only visible element which remind us that als is still here. corect me if i am wrong.
Only if you don’t want to count muscle function failure as “visible”. Not all PALS have visible fasciculations. And fasciculations can go away in a completely paralyzed muscle. But loss of function is the hallmark of ALS, not fasciculations. As we tell people who have benign fasciculations, twitching is common, nonspecific, and meaningless in the absence of muscle function failure.
 

jethro

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my foot, which is almost dead (dropped) started to fasciculate arround toes who are death. hardly notecable, but they are present. maybe it refers to "almost"dead and fasc. are red light that very soon it will not be almost, but dead.
 
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Clearwater AL

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For what it's worth....

I was told if you are on high doses of Baclofen (or similar) Baclofen will suppress
fasciculation. As Karen wrote... not all PALS will experience fasciculation.
 

jethro

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fasciculations are consequences, not cause. cathy jordan has fasc. after 34 year of als. some pals dont have it at all...
shit, it is really complex thing.
 

KimT

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I had them for a whole year before my diagnosis. They were very localized (bottom of my foot) and spread up my calf, then went to other calf. Any time I take off my shoes I can see them in my feet and sometimes calves. I've had them other places but, in those places, they seem to come and go.
 

jethro

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@kim couldnt get any info between a lines about your health status, so i am asking publically: how are you (atrophy/walk/speech etc...). you can send pm of you prefer.
 

nona

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I have had fasiculations in my arms since the beginning, though I didn't notice any until after diagnosis. My arms are pretty useless now, but I still have them. I occasionally have them in my torso and thighs, but not regularly. I still have some strength in those areas.
 

KimT

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I'm still walking but not far. I'm in a lot of pain. I do have atrophy in my legs and hands. My speech is fine and my breathing, which was bad in the beginning, is on a long plateau with my MIP, MEP and SNIP all above normal. ALS doctor noted that the muscles in my back are weakening and contributing to the pain. I can still take care of myself and drive. So I do have clinical weakness but very slow progression.
 

jethro

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I'm still walking but not far. I'm in a lot of pain. I do have atrophy in my legs and hands. My speech is fine and my breathing, which was bad in the beginning, is on a long plateau with my MIP, MEP and SNIP all above normal. ALS doctor noted that the muscles in my back are weakening and contributing to the pain. I can still take care of myself and drive. So I do have clinical weakness but very slow progression.
how far can you walk? steps a day? do you have wheelchair/ cruches or so? think that for your respiratory status is cannabis as a vasodilatator/bronchodilatator responsible. for whole status which goes in a form of a "very slow progression" there is one plant you should thank to. what is your fvc? my problems with speech just started, maybe 2 months ago, fvc is 84%. motor center is doing something, i can not simply pronounce anything. just like slow motion movie. strongly recommend further (adjusted!) therapy with cannabis, cause your progression velocity (slow) can be fully stopped. i am searching for a treatment of als with cannabis and can not find anything on internet so i started to learn. from the beginning.
 
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KimT

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The reason I bought all my breathing measurement equipment was because I went to four hospitals for comprehensive breathing tests. They all used different parameters. The first test I had done in December 2014. It said my FVC was 68. It was at a pulmonary doctor's office. Then, a month later, Mayo said it was 80. Two other tests, two other numbers. My best guess is that my FVC was always below normal because I have always been a chest breather and my total lung capacity was low.

I got professional equipment in late 2016-early 2017. My RT said they are better than the equipment he uses. My MIP, MEP and MVV have always been at or above 100%, even at Mayo, Florida Hospital, and Hopkins. My FVC is all over the place. At home it ranges from 80 - 86, depending on the day and my energy level. I will say there has been a huge learning curve in getting an accurate FVC. I think it has something to do with my anatomy. It's the same lying down as it is sitting or even standing. My SVC is a few points better.

I don't get my exercise by walking although I probably get up to a mile a day around the condo and on the grounds. I have a PWC and a walker but don't need them around the condo or grocery shopping as I can still manage.

I went to a huge mall a couple of weeks ago and I couldn't manage to go as far as I needed. But I figure I walked about a mile throughout that day. After, I found out they rented scooters and I would have done that had I known.

When I'm in the pool I straddle a pool noodle and paddle with my arms. I can do this for 45 minutes. Last year I could do it for over an hour.

My arterial blood gasses have been good with low CO2 and high Oxygen.

I'm feeling better taking the CBD in the morning and at night and plan on adding the THC in the morning, too.

I like to introduce one thing at a time to see if it makes a difference.
 

jethro

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The reason I bought all my breathing measurement equipment was because I went to four hospitals for comprehensive breathing tests. They all used different parameters. The first test I had done in December 2014. It said my FVC was 68. It was at a pulmonary doctor's office. Then, a month later, Mayo said it was 80. Two other tests, two other numbers. My best guess is that my FVC was always below normal because I have always been a chest breather and my total lung capacity was low.

I got professional equipment in late 2016-early 2017. My RT said they are better than the equipment he uses. My MIP, MEP and MVV have always been at or above 100%, even at Mayo, Florida Hospital, and Hopkins. My FVC is all over the place. At home it ranges from 80 - 86, depending on the day and my energy level. I will say there has been a huge learning curve in getting an accurate FVC. I think it has something to do with my anatomy. It's the same lying down as it is sitting or even standing. My SVC is a few points better.

I don't get my exercise by walking although I probably get up to a mile a day around the condo and on the grounds. I have a PWC and a walker but don't need them around the condo or grocery shopping as I can still manage.

I went to a huge mall a couple of weeks ago and I couldn't manage to go as far as I needed. But I figure I walked about a mile throughout that day. After, I found out they rented scooters and I would have done that had I known.

When I'm in the pool I straddle a pool noodle and paddle with my arms. I can do this for 45 minutes. Last year I could do it for over an hour.

My arterial blood gasses have been good with low CO2 and high Oxygen.

I'm feeling better taking the CBD in the morning and at night and plan on adding the THC in the morning, too.

I like to introduce one thing at a time to see if it makes a difference.
there are als, ALS, mnd etc, but your seems to be one of the most peculiar i have ever heard of.
 
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