What About Spasms?

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Kewanee

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CALS
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New England
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Skowhegan
I'm getting spams everywhere. Firing in the torso, legs, upper arms and wrists and thumbs. You name it. They are strong spasms and can result in cramping in my ankles which results in my foot inverting or contorting to the outside and under. Painful.

Most spasms are not painful. Just that they are everywhere all of a sudden.
I lifted up a pot of macaroni and my wrist stayed bent for awhile.

My mom who has been told she may have ALS has fasiculations but not everywhere and they are minute rapid twitching or quivering in the backs of her arms and forearms.

I also for years now, have gotten whole area's that move, like a entire foot twitching back and forth rythmically when I sit down. That is when the torso spasms are worse as well. They are new.

What about the spasms. Does this happen in ALS?

Kewanee
 
Shaking in the legs and feet

when my husband was diagnosed, one of the first things I started noticed was when he would sit down, or even in the car driving, his legs would shake. Sometimes he would have to pull over and wait a minute for it to stop. If I remember right, his legs was the only part of his body that did that.
Sarah
 
With ALS, there is some form of weakness. Spasms by themselves can be due to many factors.
 
I have similar symptoms but have clean EMG and a certified specialist says I do not have motor neuron disease. I really get the spasms and twitches at night in bed and now my hands sometimes quiver when using a mouse on the computer-- I can't figure it out-- and have had symptoms for 4 months-- all doctors say stress and anxiety
 
Of course they do........cuz they don't know what else to blame it on and they don't feel like figuring it out. So, to cover their lack of intelligence, well, it must be stress and anxiety. I heard that for almost two years only to now have a positive muscle biopsy. Ticks me off. If I find out that my progression could have been stopped before I experienced permanent loss, well a lawyer will be causing them some stress and anxiety.
 
doctors

I agree I have symptoms 8 years and it took 6 years to get a Dx They waited and waited until a monkey could have diagnosed me. By then it was soooo obviuous If Its not ALS and I could have proved it I have every lawyer out there as well .I really think there are some of us out there with some thing they still dont know about Wouldnt it be something if it were treatable and they just dont have the knowledge of getting a DX.I am so frustrated sitting here getting worse everyday.when 8 years ago it was just slurred speech for a whole 5 years . I am just rambling on Il know your all feel the way I do. Iam thinking of a autopsy after I die so my family will have the answers Pat.
 
Pat - first, it's really great to hear from you! Second, I agree on the autopsy. I wish we had one with my grandmother who suffered from "weak legs" for years. We all blamed it on deconditioning and the fact that she stayed in the house all day. She said she felt too weak and light-headed to go anywhere. I feel so bad now. Have you had a muscle biopsy? It just seems that the muscle biopsy is the test that gave many their final diagnosis. Leslie
 
leslie,

your PM box is full, i tried to PM you today.

tomorrow is big day...i'm thinking about you
 
Thanks Jamie. I will be sure to let y'all (love using that!) know what the doc has to say tomorrow. I'm definitely scared. Oh, and I emptied my PM box. Leslie
 
Doctors visit

Dont be nervous, remember we are all here pulling for you.God bless, Keep us posted . Pat
 
So why don't they just do a muscle biopsy and skip the EMG? It is so archaic and not a good experience. At least the biopsy they can give you something and then all you have to do is heal. I assume it may be a punch biopsy, I dont know.

I'd like to skip EMG with mom. Who needs it at 84 years old? I had no idea it could take so long to diagnose until I read this.

I have been to the MDA when spasms got worse and I had trouble getting around. A little blood work and exam, a partial mind you EMG, and off I went. I can see how someone could slip through the cracks. They don't go to the big tests, like gene testing for instance.

Need more diagnostic procedure. More knowledge should come in here at this stage as well.

Kewanee
 
annmarie said:
We often wonder aboiut that, I think the reason they do not do the muscle biopsy, is because they have to wait until the muscle is diseased enough, or correct me if I am wrong but I think the muscle can become too diseased to diagnosed. for als. I may be off on this, it is just what I have come up with. I agree the EMG is so old fashioned and primitive, it is the same test they did for so many years. When Lou G. was diagnosed. they had him sit nude for 2 hours so that they could see the fasics. and when they did diagnosed. him only Dr. Mayo, the manager of the Yankees, and Lou's wife new the disease was fatal, they never even told him. We need more research, the diagnosed. process is horrible, and so frustrating.


See thats whats crazy about it, all the fasics that they want to see to confirm ALS because the bfs thing can cause the fasics everywhere to, so you would think that that approach would not be very important either if given the fasics was the only symptom.
 
Annmarie - you are right about the muscle being at the perfect stage for diagnosed., too early might not result in a diagnosed, but too much muscle death will make it impossible to diagnosed. With me, I was worried I wasn't in bad enough shape for results. My quads weren't giving me any problems whatsoever - no weakness and no twitching. And I still got a diagnosed! So, again, it's a crapshot!

And Kewanee, it is not a punch biopsy. Even the needle biopsy is very invasive because they fail to tell us that the "needle" is the size of a pencil and goes down about 4-5 inches! I would think it would be hard for an 84-year-old, but, then again, some 84 year olds are in better shape than I am!

~Leslie
 
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