Old 11-18-2014, 12:30 PM #1 (permalink)
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Default Show Me State

Hello! I'm hoping to hear your perspectives. I did read the sticky but had a couple questions.

I've had fasciculations for a couple of months. My strength feels the same as always. Everything seems business as usual. I lift my luggage, turn keys, jog up the stairs, can walk on my toes/ heels, etc. The start of these twitches put me on alert though. Reading the story of a local doctor who first noted twitching and cramping in his calves but never mentioned weakness before being diagnosed with ALS is another factor in my search for answers here.

I went to see my doctor a couple of weeks ago and he checked my reflexes, coordination and put me through a couple of strength tests. It wasn't exactly comprehensive testing so I'm thinking of asking for a referral to a neurologist. My thinking is just because I cannot see evidence of weakness doesn't mean it couldn't be there somewhere. My doctor asking me to raise each thigh with resistance or push against his arm doesn't seem like much testing.

My biggest worry is that while I've felt twitching in my arms, hands, thighs, buttocks, back and chest on occasion for 2 months, I never feel (or rarely feel) the calf twitches I get. I can see them at certain times but never really feel them as I do the other areas. Why? Is it a bad sign to not feel twitching in an area? I don't know how long they've gone on. Could be the same 2 months. Could be much longer. Would I have noticeable weakness in my feet or legs if they had been ongoing for more than a couple of months?

Without noticeable weakness, I looked at atrophy. Are my muscles a little smaller than they were a few years ago? They are. I'm now 40 and don't work out often so that's going to happen. My limbs seem to match up though. Would the atrophy in ALS be associated with noticeable weakness?

The other odd thing is, since my calves started having more activity the last couple of days, my arms and other areas have quieted down. I'm not having much twitching elsewhere, if any, after 2 months of feeling one in various places every 5 or 10 or 15 minutes throughout the day. Does this mean things are settling in my calves? It has never been constant twitching but I don't believe it has to be to indicate a problem. I can get my twitching to stop in any area by contracting the muscle. I'm just not sure why my calves have ramped up the last two days though. I've been looking them over for weeks and they seem more active now.

Any thoughts are appreciated.

God bless,

Jay
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Old 11-18-2014, 12:46 PM #2 (permalink)
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Hi Jay, I think I can give you the great news that nothing you report sounds anything like ALS. I have no idea why you think it does, but I read your post carefully.

Twitching doesn't mean anything, lots of people twitch for many years and don't have ALS.

Please may I suggest you go to your doctor and explain exactly what you wrote to us here, and tell him your concerns regarding ALS and I believe your doctor will be able to help you.

The very best thing you can do is stay off this site and stop researching ALS - you can pretty much read anything you want to believe and back your beliefs up.

All the best with solving your health issues.
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Old 11-18-2014, 03:04 PM #3 (permalink)
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In ALS twitching isn't all over as you indicate. And it doesn't come and go. It will start in one region, say just the tongue or just the bicep. It will continue there and get worse as that muscle begins to atrophy. Significantly. It's not a matter of "hmmmm, is my muscle a little smaller". Fasciculations don't quiet down and move elsewhere. Once they begin, they stay - that is until there is no muscle left. To be perfectly honest, if you have ALS then so do I. Twitching is a result of the stress I live under. I don't have ALS but I have a husband who does. Good luck to you!
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Old 11-18-2014, 05:47 PM #4 (permalink)
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Default Re: Show Me State

Trust your doctor. They're more educated than you know. In fact, they're more educated than we can ever be.

Modern medicine puts a great deal of thought and debate and experimentation into finding the best ways to diagnose people properly. You might notice that this "simple" strength test is used by every doctor in the same manner. That's because they know it works.

ECpara summed up twitching very well. Your twitching did not say "ALS" to me either.

You asked if atrophy would be associated with weakness. This is how it works in ALS: ALS destroys a nerve in your brain, then the corresponding muscle stops working. It just lays limp and never receives any signals to contract. So it's paralyzed and useless. Then ALS moves to the next nerve and destroys it, and your calf stops working. ALS proceeds upward from your feet, in serial order. Eventually, after a muscle has been inactive for awhile, it begins to atrophy and it gets noticeably smaller.

You don't have ALS to worry about. Follow up with your doctors to find out why you're twitching. Honestly, I wouldn't worry about it. People twitch, especially as we get older.
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Old 11-18-2014, 08:21 PM #5 (permalink)
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Default Re: Show Me State

Check out BFS, Benign Fasticulation Syndrome. They also have a Forum similar to this one.
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Old 11-19-2014, 06:43 PM #6 (permalink)
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Default Re: Show Me State

Thanks everyone for taking the time to offer your thoughts. I was ready to let go and move on before I had a new one today. I had a few fasciculations under or around my bottom lip. Strange. After the body wide twitching the last couple of months, in the absence of apparent weakness, I wondered if this seems a possible bulbar rather than limb onset. My tongue seems normal but twitches around my lips is very unusual, no? I won't pander on. Just a strange new symptom today that I figured I'd ask if anyone has seen this, twitching in the area for initial bulbar presentation.
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Old 11-19-2014, 06:52 PM #7 (permalink)
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I think you turned 40. It only seems like Bulbar onset.
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Old 11-19-2014, 06:54 PM #8 (permalink)
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i worked most of my life in mo and lived in ks. i wished i lived in mo now. but it like they say there, you got to show me. well that what i wanted the dr's to do.
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Old 11-19-2014, 08:35 PM #9 (permalink)
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Originally Posted by JasonSt.Louis View Post
I was ready to let go and move on before I had a new one today. I had a few fasciculations under or around my bottom lip.
Still no, sorry any new twitches won't convince us of ALS.

Please go back to being ready to move, and then do. It will be the best thing for you, truly.

I hope you work with doctors to resolve everything.
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Old 11-19-2014, 09:46 PM #10 (permalink)
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My husband has had bulbar onset ALS for three years and he's never had lip twitches. Trust me, you don't have ALS.
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Old 11-27-2014, 07:53 PM #11 (permalink)
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Hey, Everyone. I was going about Thanksgiving weekend here and felt pain in my right heel. I know pain is sensory (symptom wise) so I ignored it at first. After a few minutes I took my sock off and watched my baby toe extend away from the other toes for a few seconds. I've never seen this before. It returned to its normal place and the pain in my heel disappeared as well. I can bend my little toe easily enough. No weakness there. I thought I had read somewhere that a baby toe separating was an ominous sign. Is there any feedback there? Thoughts are appreciated. Is Tillie still there? Dusty? Thanks again, Jay.
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Old 11-27-2014, 08:27 PM #12 (permalink)
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Sounds like a simple toe cramp to me. I get them in my middle toes, especially after a lot of walking. Never heard of this as an ominous sign.
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Old 11-27-2014, 09:20 PM #13 (permalink)
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Jason. When you get a pain in your ass you'll know how we feel.
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Old 11-27-2014, 09:34 PM #14 (permalink)
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Jason. When you get a pain in your ass you'll know how we feel.
ditto that.................................
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Old 11-28-2014, 12:32 AM #15 (permalink)
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Double ditto! lol
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