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minions09

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Sep 29, 2015
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19
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Learn about ALS
Country
US
State
WA
City
Bellingham
So it started about 3 months ago where I'd get restless leg syndrome symptoms at night. Cramping and my leg would jerk because of the cramps. That lasted for about 2 months. Now for this last month, I still get the cramping at night, but now I have twitching ALL over my body. My feet, legs, arms, butt, hands, tongue, scalp.... I will hold my legs up off the ground and my legs start trembling. I haven't tripped or fell, but my legs feel weak. I hold a baby for 15 minutes and put it down and my arm is shaking. The twitching is continuous and sometimes feels like muscles contracting, and then sometimes feels like popcorn. Besides my tongue, I don't see the twitches, just feel them "pop" everywhere. I called my neruo and cant get in until the end of the month. Anyone have these symptoms as a "first"?
 
Minions, have you read the stickies? A great deal of time and effort has gone into writing them, and I think that you'll find reassurances there.
 
Yes I have read them. Just like anyone else curious, I thought I would see if any of that sounds familiar to ALS. I have also read a lot of the threads before posting.
 
Respectively I would say to read the stickies again, but very slowly and carefully.

The people here with ALS are too sick to answer and the carers are so exhausted caring for a terminal illness yet Nuts took some time to answer you very kindly.

The stickies are providing you with every answer to what you have asked, and very clearly. Please think about the exhaustion of the people here who are battling this disease when you feel curious.

I am very happy to say you have ZERO ALS symptoms.
 
I have a certain fondness for Bellingham, so I'll answer Minions.

You don't have any reason whatsoever to think about ALS.

You should leave quietly, now. Enjoy Bellingham.
 
Thank you all for your answers. I appreciate them. I think people come here because we fear the worst, so I am sorry to have stepped on anyone's feet. Random odd non stop twitching and so on is worrisome to most, including myself. Thanks again for the help :)
 
For the benefit of future searchers, I will say that "non-stop" twitching/shaking/weakness is pretty much by definition not ALS. The nerves don't all fail at once, and the weakness when they do is much more profound than you describe (you can't lift the baby or hold your legs up at all). Since you are worried, see your primary care doc. Perhaps your RLS, if you have it, merits more definitive treatment. For example, your doc can check your ferritin and advise about iron supplementation, which is often a strategy to improve RLS symptoms, and there are rx strategies as well.

Best,
Laurie
 
So it started about 3 months ago where I'd get restless leg syndrome symptoms at night. Cramping and my leg would jerk because of the cramps. That lasted for about 2 months. Now for this last month, I still get the cramping at night, but now I have twitching ALL over my body. My feet, legs, arms, butt, hands, tongue, scalp.... I will hold my legs up off the ground and my legs start trembling. I haven't tripped or fell, but my legs feel weak. I hold a baby for 15 minutes and put it down and my arm is shaking. The twitching is continuous and sometimes feels like muscles contracting, and then sometimes feels like popcorn. Besides my tongue, I don't see the twitches, just feel them "pop" everywhere. I called my neruo and cant get in until the end of the month. Anyone have these symptoms as a "first"?
I am brand new and am far from an authority on ALS, but many of your symptoms are similar to mine. I was diagnosed in April of this year at Baylor, and confirmed the diagnosis with a VA neurologist that same month. I have had pretty severe muscle atrophy primarily in my upper body and arms, have severe speech problems that began gradually in January of this year and has progressed to the point I am very hard to understand, and also have the trembling, cramping and muscle twitching you describe. Trembling actually started 2 years ago, and the twitching came on gradually about a year ago. It was most apparent in my arms first, but traveled to my legs as well. Cramping is a problem day and night in arms, hands, legs and feet. One other symptom is scalloping of the edges of the tongue which is very pronounced in me.
 
"severe muscle atrophy in upper body and arms...scalloping of the edges of the tongue"

"trembling, cramping and muscle twitching in arms first then legs"

Veteran, did they call it Bulbar or not? Does your tongue have paralyzed muscles?

I'm trying to get a better picture of your progression. Are any of your limbs paralyzed?

--Mike
 
"severe muscle atrophy in upper body and arms...scalloping of the edges of the tongue"

"trembling, cramping and muscle twitching in arms first then legs"

Veteran, did they call it Bulbar or not? Does your tongue have paralyzed muscles?

I'm trying to get a better picture of your progression. Are any of your limbs paralyzed?

--Mike
It has been termed Bulbar by 2 neurologists. My speech now, is very difficult to understand, and I run out of air quickly when I do try to speak. I have no paralyzed limbs yet, but have been advised to have my home modified, and have been cleared by the V.A. for both home and vehicle adaptation.

I do not know if my tongue has paralyzed muscles. I do know that chewing is much harder and swallowing is a chore that often leads to severe coughing.

-Dick
 
Welcome, Veteran. You don't need to stay in this "Do I Have ALS" subforum. You'll find better comraderie and information in the other subforums.
 
Minion, my General Practioner sent me to get a nerve conductive study here in town, and that proved affirmative.

Ive seen a few neuros in town, some less impressive than others.

Feel free to email me
[email protected]
 
Thanks Mike! Still feeling my way around.

-Dick
 
Got in with the neurologist yesterday because of my symptoms they wanted to see me asap. The doctor only ordered a NCV for now. Will that pick up any abnormalities or would I need an EMG as well?
 
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