Old 10-27-2013, 03:32 PM #1 (permalink)
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Default ALS - muscles or nerves?

I have a quick question about ALS. I know none of you are doctors, but some of you may know enough about this disease to give me an answer. I saw my neurologist a few days ago because lately I've been having really bad issues with painful muscle spasms and stiffness in my calves and the backs of my thighs. I've been getting the kind of spasms that will wake you up in the middle of the night screaming in pain, but I'm getting them during the day now. They really suck! I was at the movie theater one evening with my husband (a packed theater) and had a nice big spasm right in the middle of the movie. It was embarrassing to say the least!

It's not the first time I've seen this neurologist. My previous visits were a few months ago first for tingling and numbness in my hand, then weakness in my hands and muscle twitching in my arm. I stopped seeing him for a long time because I had a brain surgery in September and wanted to see if my muscle symptoms would just go away. I'm almost 2 months post-op and they have not gone away.

Anyway, he mentioned something to me that I didn't understand. After seeing him for the spasms, he said, "I think you have a muscular problem". I asked what that meant and he said there are too many possibilities to name them all and that he needed to do more tests.

I've already done an MRI, MRA, nerve conduction test, and had numerous blood tests, but I stopped short of the EMG and lumbar puncture because the surgery was getting close

I asked if ALS was on that list of possibilities and he said, "No, ALS is a disease of the nerves, not the muscles". Even though I was confused by that answer, I figured he knew what he was talking about so I just left it at that and went home.

I was on the MDA website over the weekend looking at different muscular diseases and noticed that ALS is on the list. Now I'm feeling like I'm getting conflicting information.

Is ALS a disease of the nerves or a disease of the muscles?
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Old 10-27-2013, 03:58 PM #2 (permalink)
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Default Re: ALS - muscles or nerves?

its early days after your brain surgery....your gonna have some niggles for a while yet....the brain sends messages via the spine to muscles and everywhere else...give yourself a chance to heal and stop worrying about summat you alnost certainly aint got...good luck johnny
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Old 10-27-2013, 04:10 PM #3 (permalink)
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Default Re: ALS - muscles or nerves?

In ALS the nerves die going to the muscles. More technically it is the motor neurons.
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Old 10-27-2013, 05:19 PM #4 (permalink)
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Default Re: ALS - muscles or nerves?

I'm not worrying I have ALS. He told me he wonders about muscular issues, then said ALS is not muscular issue. I am opened minded about everything from BFS to anxiety to MS to nothing. I would just like a diagnosis. My neurotologist said my twitching, cramping, weakness are not related to my brain issue (SCDS). I'm not assuming I have anything, nor am I paranoid about ALS. I continue to come here because I'm interested in learning about it and helping to spread awareness by sharing videos, websites, etc and talking about it.

So he tells me he thinks I have a muscular issue, then I read the MDA website and now I am confused and am looking for an answer. Is my neurologist correct that ALS is not a muscular disorder? My question is.... Is it a disease of the nerves or muscles or a combination of both? Again, I don't think I have it. I'm just curious. I know many people are paranoid here and I was at first. I no longer stress or worry about ALS, but I do want to learn more.

Last edited by goolia75 : 10-27-2013 at 05:25 PM
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Old 10-27-2013, 05:20 PM #5 (permalink)
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Default Re: ALS - muscles or nerves?

Thanks, Brian.
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