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zny444

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Thanks for the info Pat...

Iv'e seen a total of 4 neuros (two from the uop and 1 from umdmj (jerry belsh). I just spoke to Dr. Belsh's nurse at umdmj. She said that she spoke with the doctor regarding me coming in for an emg. She said the doctor said for me to go to my GP if I'm having shortness of breath. It seems he does not belive I need an emg, my wife agrees with him. She thinks I have seen so many dr's regarding it now that I need to let it go. It's hard as I "think" I'm seeing flatting calf muscles and now shortness of breath. What scares me the worse is that I definetly have a slight tremor also. Iv'e also been seeing my regular neuro for this tailbone/sciatic pain and she does not want to even hear about my twitching and when I showed her my calf she said "thats your muscle". She beleives I have seen THE specialist in the area and if he says I'm ok then I'm OK. Do I sit back and just let whatever happen or do I try and get a 5th opinion? BTW... all the dr's said I did not warrant an EMG. My right calf is twitching non stop! It looks like an invisible finger is poking around on it all day 24/7!
 

Al

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Hi zny. After 4 Neuro's you'd think that one would say possible ALS if something definite was there to point to it. Most people describe twitching from ALS symptoms like a bag of worms wriggling under the skin. You are young to be diagnosed with this. Maybe your wife is right. Sit back. Relax (not easy) and wait 6 months and see if you worsen. Now if the shortness of breath worsens get to a doctor. It too could be caused by anxiety or hyperventilation. Not trying to trivialize your symptoms but I'd try and wait it out. Knowing now or 6 months from now will not make a difference in outcome or treatment. Good luck and take care. AL.
 

zny444

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Al,
Both my wife and I think this makes the most sense. I will take your advice and sit on it for a couple of months. I will stop drinking and take my vitamins and take better care of myself and hopefully this will all go away.

I'm still having the twitching and yes they do feel like a bag of worms in right calf but I will wait it out some more. I will also focus on the fact that I saw 4 nueros about this and they all said I was fine.

Thanks for your help with this... EVERYONE!

Talk to you all soon.

Be well.
 

Al

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Now I didn't say it felt like a bag of worms. It looks like a bag of worms. You can't usually feel the movement unless it is in the bigger muscles. That's what makes me think it may be something else if anything at all in your case.
 

zny444

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um... I can feel some of them and some not. Does it look like a bag of worms?... hard to say. They look like little movements under the skin, like little sporadic indents. I also have them all over my body and the other ones look like big muscle movements like regular eyelid twitches only in my bicep or tricep for example. I also have pins and needles in my toes/feet when sitting down for a period of time.
 

Al

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Well like I said try to wait it out and try to relax. Good luck and keep us posted. Al.
 

BWk

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Zny444
Hate to keep telling you how closely your symptoms match mine,but I'm sure you want to get to the bottom of this.I had much tingling and numbness in feet early on about 7 to 8 monthes into disease. I also had muscle spasms in triceps and back area,kind of like a ripple effect. Still have some muscle spasms off and on. I'm not a doc,but I wonder how much they know about als sometimes at least the three Neuro's that I went to!They [two of them] kept insisting it is and has to be nerves almost to the point of getting mad at me! Hang in there,time will tell. Barry
 

zny444

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Barry,
Thanks but no thanks... thats not what I want to hear. I don't know what to say to your comment... I'm not going to self diagnose myself and I'm not an expert in neurology. Time will tell... and I have to keep believing that I'm to young and don't fit the demographic from what my docs have told me. They insisted (all of them in fact) that the majority of patients complain of some sort of weakness first and it was extremly rare for a person to be complaining of twitching as a first sign. Lets hope there right... I have my whole life ahead of me! I'm 29! I have no weakness and can still ride a mtb bike and lift weights. I have to have faith that I'm ok and that its all benign. Tell you this... the disease will not kill me... I'll make sure of that!
 

DarrenHock

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Kansas
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Olathe
Hello Again Everyone,

For me, the first time I went to the doctor was for left arm weakness. I am 36 years old and thought I pinched a nerve. Well they sat me down the first visit and told me I have ALS. I have had all the test and it has been confirmed by 3 doctors. I am becoming worse almost daily. I go on disability next month and might start traveling the world before it is to late. Problem is, since my wife left me last month, I may be traveling by my self. Not really the person to be alone
 

marlo

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Feb 20, 2006
Messages
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zny444 said:
Hi BWK,
I have had some weird trembling nothing really noticable but its as if my lower jaw has a vibration to it... it's really weird! I also have had some shaking of my arms after lifting something heavy or something like that. As for the weakness... I can't say I have any. I still can lift weights, ride a bike, and run. I don't feel fatigued or tired either.

Thanks for your help and support!

Hello,

Theres no way to know right now if our symptoms are for the same reason but yesterday for the first time my right arm started twisting back and forth on it's own after i carried a bucket of water outside to water the plants. No one noticed it so i kept it to myself for now. It startled me, cause it had never did that before. I'm almost certain that mine was from the ALS. Anyway,, i'm hoping and praying the best for you. Take care and try to be positive.

Love and Prayers
Marlo
 

hwbissegg

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Jul 1, 2006
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Utay
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Salt Lake City
Hello. I don't know if you're still reading these or not, but I still thought I'd comment. Anyhow, my ALS did start with weakness...although I was able to be quite active for many months before it got really bad. Once I realized the weakness wasn't just "old age", I started noticing the twitching and that's when I went to the doctor. After a bunch of my blood work was coompleted and normal, I was sent immediately for an EMG...so that's weird that your docs don't think anything of it. But my diagnosed didn't come until a few weeks ago because it took time for my symptoms to manifest and show up on the EMG. So I don't know if that helps or makes you more nervous?! One thing is for sure though...age doesn't matter as much it may seem. The fact that I'm female and my age gave me comfort for months before I was diagnosed--I'm only 27! So I know firsthand the kind of worries you and your wife are going through...except now we're actually living it! But, like you, I'm not gonna let this get me! And the good news is you don't have any other symptoms so far so just keep thinking positive and live in ignorance as long as you can! Be sure to let us know of your progress. Good luck!
Heather B.
 
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