Als

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4rhl1981

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Just curious which comes first, does the muscle atrophy come first or does the nerves die off first in als?
 

Mr. Bill

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Not being a doctor, I undestand that it's the fact that the nerves die that causes muscles to atrophy.

Myself, I had fasics for quite awhile before I noticed any atrophy in my legs.

I used to bicycle between 3,000 to 4,000 miles each year. My legs were quite muscular. I had twitching for quite some time and now I can easily get both hands around my calves and with a little stretch I can get them around my thighs. I can, however, still walk. Not far or fast, but I can walk.
 

Boo Boo 621

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Hi Bill..then you had no weakness? I am having fasics in my right calf for a week (that I know of) now and just yesterday noticed the twitching calf has a bit of a smaller muscle - especially when I flex them. I don't have any weakness and since I cannot seem to get off this site, I am nervous all over again after readin your post since I too have fasics that seemed to arrive first. I could feel them at first, and still can but at times I don't and can see my calf muscle flickering. I am going to the neuro tomorrow and have so far driven a few people crazy (on this site and in real life!) with these worries. :)
 

chris_uk

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am back and still twitching like mad!

Is it right bill that you had no weakness before your atrophy or twitching? and also that you have had 3 clean EMG's ?

That certainly does blow alot of theories out of the window!

Chris
 

Kuba001

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I see little atrophy allover my body same whit fasciculations and little weakness allover it start on June 2008 one month ago I had pretty clean EMG so it looks like atrophy can be before something is wrong whit nerves.
 

BethU

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Oh, boy ...

If Bill went from bicycling 4,000 miles a year to barely walking, I would guess that there is weakness involved, unless he just realized suddenly that he hates bicycling.

And ... the information you've gotten from your own neurologists who have examined you, and from the medical experts on this forum are not "theories." They are medical facts. Why are you guys trying so hard to prove you have ALS? What possible benefit do you think you get from having ALS, besides a handicapped parking permit?

This is way beyond hypochondria ... you're entering Munchausen Syndrome territory now.
 

chris_uk

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sorry that was not my intention, not at all, but the 3 clean emg's is a worry for the rest of us
 

olly

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do not panic

firstly i posted after bill said about the clean emg,s on the pls site..................no one should compare themselves to him!
bill had umn onset/pls that changed to als as i understand it.
there are very very odd few who for some reason do not show lmn involvement on early emg,s..............either because they started as umn onset/pls or the emg,s were not performed properly ,maybe because it was not a top als clinic with a als neuro.
when you go to one of your top als clinics over there with top neuro,s every test is carried out properly.
unless you have had every test to rule everything out that mimics mnd then it should not even be on your mind to suspect it.
weakness and twitching then atrophy is the order of als,no clinical weakness=no als
 

Al

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3 clean EMG'S IS LIKE 3 NEGATIVE PREGNANCY TESTS. yOU AIN'T PREGNANT AND YOU DON'T HAVE ALS. PERIOD. AND IF YOU HAVE THEM YOU AIN'T PREGNANT.

AL.
 

Boo Boo 621

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Hi everyone, I am back. Oh no! I just wanted to share that after seeing one neurologist that decided I was fine and needed no EMG, I went ahead and saw another neurologist just yesterday because I of course just couldn't put it to rest. He was different in that he doesn't feel it is ALS but told me he is more aggressive so why not go ahead and do an EMG. He had openings for today so I had scheduled it. My baby ended up getting a fever overnight so I did not go this morning. I am very scared all over again because I feel flickering all around my legs and now my right hand feels all tight and hard to type comfortably. I cannot seem to get over this and I did not reschedule the EMG yet because I wanted to see if I could work on my anxiety and panic. My family is in town and I am just not myself. I feel TERRIBLE and ANXIOUS and notice every little twitch, which now I feel like is in the other leg too from time to time. My knees feel "funny". They're not in pain but feel kind of achey or just not the same. My right arm is just so tight too. I know I mentioned that and have noticed this hand symptom in my life before here and there in the past several years..Do you think it's ok to just not reschedule the EMG just yet? I want to see how I do adn how I am. I want to get back to ME again. You would think I would jump at the chance to have the EMG done, but I didn't. I wanted to do it while my family was here in case it was bad news, but really, I wish I could just stick with the first neuro's advice and move on for now. I'm sorry to be a pain but I'm wondering if I really should talk to someone about anti-anxiety meds or something. I'm just still freaking out inside. And feeling random twitches in my weird feeling legs periodically! Oh, and my baby is fine, we were running around all day yesterday and she caught a bug but the fever has come down. She is on baby Tylenol drops. Thanks for listening. AGAIN.
 

BethU

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Boo ... I'm wondering if I really should talk to someone about anti-anxiety meds or something.

Yes, yes, yes ... I really think you should talk to someone about your psychological state. Whether it's meds or counseling, you clearly need some help. For your own sake and the sake of your baby, get some professional help for your anxiety.
 

brendapals

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boo,
Yes, dear, get to the doctor TODAY- outpatient center, MEC center, ER, wherever, and get something for anxiety, please, for you and your family's sake,
-brenda
 

ktmj

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Or if you don't want that expense, a double Jack and Coke will work just fine. I'll send you the bill.:p
 

4rhl1981

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Or if you don't want that expense, a double Jack and Coke will work just fine. I'll send you the bill.:p

I take 2 maybe 3:p
 

Boo Boo 621

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I do know I'm an anxious person, especially these days and perhaps my fears are unrealistic but MAN I can't fully shake it off. I am having an EMG tomorrow..on Xmas Eve! But I figure I will get this over with. I'm very very nervous as the twitching and whatnot feels like it is all through my legs though my mother is convinced I am bringing alot of this on myself. I just cant get away from thinking I have ALS. I read something about Jennifer Estes who wrote a book with her sisters about her harrowing journey that began at 35 years old - MY AGE - and that she felt like snakes were underneath her skin (in her legs) all the time. I am so aware of the fasics, I get pangs of anxiety and panic so bad when I feel the sudden twitches. The calf has kept it up, the rest are like quick shooting ones. And my legs just feel so different and achey or SOMETHING. Of course an earlier post scared me since the person (Bill I think, the cycler) had fasics before he realized there was any atrophy, etc. I'm sorry to be a pain (Im sure I've said that before) but I am PETRIFIED about tomorrow. I am praying for good news. If you receive abnormal results, what is next? And for those that don't know me, I've had noticeable twitching in my right calf for two weeks now and in the meantime, have noticed more fasics in both legs. There doesnm't seem to be any consistency with any of them but the right calf. I don't have what I'm assuming is clinical weakness and what I thought was slight atrophy of said calf turns out to be the same size calf as the other when relaxed and simply a different shaped muscle than the left. I'm assymetrical apparently. I'm sorry to panic but help!
 
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