Twitching for 3 years, no weakness, but now cramps?

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rasmus

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Hello. I am a 19-year-old male who has had twitching muscles all over my body for a little over 3 years now. The twitches range from little, barely noticeable ones to big thumping ones that you can see trough clothes. In the beginning I used to have twitches that would go on in one spot constantly for days or weeks at a time, but I haven't had those anymore.

The twitches are everywhere from my eyebrows to the soles of my feet, I think I've even felt one in my tongue a few times. My muscles also sometimes twitch after I squeeze of flex them very hard.
This has been going on since I was 16, so for about three years now. There have been times when the twitches are few and far between, almost completely gone, but also times when I feel like all my limbs are like bubbling like boiling water.

I saw a doctor for this about a month after it started, she examined me and checked my reflexes, which I thought looked pretty brisk but she didn't comment on it. She prescribed me magnesium and some vitamins (which didn't seem to have any effect), and sent me to have an EMG.

The doctor who did the EMG said it looked completely normal, but the twitches persisted, so I had another EMG about 1.5 years after the twitching started. This time too the neurologist said that the results were normal, and that he didn't see any muscle atrophy that I had also been worrying about. He did however say that it's strange that the twitching would go on for so long in a healthy person.

I was very relieved after this, and for the next 1.5 years I've been pretty much carefree about this, but this summer I've developed sort of cramping that is still going on. It's mostly in my right calf, but also in my other limbs and my neck. It usually happens when I'm moving about, with a moderate pain in a contracted muscle and an unpleasant feeling of tightness and stiffness. The pain lasts anywhere from a split second to maybe 10 seconds, when it happens I always try to massage the muscle, but by the time I can do that the pain is usually gone. I can also always relax the muscle normally immediately, so I don't know if that's typical for cramping or not.

Regardless, this has been going on for over a month now. I've had similar "cramping" before, but not this widespread, and never this long.

Just yesterday I walked for about 10km in rough terrain without any problems, but when I'm standing still or walking around slowly in the house my calf often cramps. Also I feel like the small muscles in my palms, the backs of my hands and in the soles of my feet and on top of my feet cramp.

I still have no weakness in any muscle, at least I don't think so.

So my question is, do you think there's any way this could be ALS at this point? Is this sort of cramping typical for ALS? At 16 even though I was afraid I understood that ALS at that age would be pretty unlikely, but according to my understanding it's not unheard of at 19.

Also as an additional question: is a spastic muscle unable to relax at any time, or how does spasticity manifest?

Thanks in advance.
 
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lgelb

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1) No.
2) No.

Your last question is too general to address. You have no problems that would make us think about ALS, and two normal EMGs to argue against it. Unless you lose the ability to perform normal activities, which would merit a visit to your primary care physician, I would live life like a healthy 19-year-old. You might reconsider your diet, hydration and some magnesium lotion.

Best,
Laurie
 

rasmus

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Thank you so much Laurie!
 

Atsugi

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Hour and a half later, and you're still here, on the website of terminally ill people. That's not living life like a 19-yr-old could. Go. Enjoy. All your symptoms are symptoms of a nervous person, or a person in a stressful life, or a person who needs their diet adjusted.


See your family doc. Forget ALS. Enjoy life. I rather suspect you're totally healthy but you just don't believe it.
 

rasmus

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Sorry to bother again, but I noticed that the cramping in my neck has increased a lot in the last couple of days. I get these random annoying pains that I've never experienced before on either side of the neck that force me to kind of turn my head to get rid of the pain. This concerns me because I've heard people with ALS say that neck cramps like these are/were among their symptoms. I still have cramps in all my limbs, although now I feel it's less in my legs and a little more in my arms. Sometimes when I'm doing something with my hands I get a stiff feeling in a muscle, like it's going to cramp, but that sometimes goes away even if I continue that movement. When I first started worrying about these cramps about a month ago, it was partly because when I would play a chord on the guitar that required me to stretch my little finger far to the side, it would cramp, but I think that has gotten better since, and it doesn't really happen anymore, so would that be reassuring?
Generally speaking, would widespread cramping before weakness instead of cramping in a localized area, like for example in one limb, point more towards ALS or away from it?
Thanks
 

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Please re-read Atsugi's message and, as well, re-read the READ BEFORE POSTING sticky. As your "symptoms" are in no way ALS related, doing these two things should once and for all relive you of this unnecessary worry. Go out and live your life. At 19, I had not a care in the world, as this is the stage and age at which you should find yourself. If you cannot, please seek counselling.

Good luck to you and take good care.
 

rasmus

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I've tried to heed your advice but it's been really difficult because I feel like the cramping just keeps getting worse. Or not necessarily worse, but more frequent, and spreading to more areas. I've had cramps in my back and (I think) my stomach now. My neck is really stiff and sore, and it often cramps when I move, even though I've tried to massage it and sleep in a better position.

What's weird is that I can almost swear that sometimes when I get a pain that feels just like a cramp, the muscle feels relaxed when I massage it, so I'm not even sure if those are really cramps or just some kind of random muscle pain. Also like I said I can almost always relax the muscle normally by changing the position of the limb, I don't need to stretch or massage it for it to stop.

Still, I'm concerned because whenever I move even a little I usually get a cramp or a pain somewhere, that can't be normal. I had some magnesium tablets left from the last time, and I finished them over a couple of days, but they didn't seem to do anything.

Another thing I noticed is that when I squeeze my fingers into a fist, a large and noticeable dent appears between the tendons of me left forearm, but on the right that dent is almost nonexistent. Could that be atrophy?

I forgot to mention this in the beginning, and I don't know if it's significant or not, but both times when I had an EMG I didn't get any detailed results or follow up calls, the neuro just said "looks normal" both times. Is that usually enough?

Regarding my twitches, I've noticed that they flare up whenever I get anxious about them, for the last year or so they've been quite minimal, but now there are a lot of them again after I started worrying about the cramps. Could anxiety alone explain 3 years of twitching? I should probably mention that I have a history of health anxiety about a lot of other things too.

I know you can't really test your own reflexes, but I tried anyway, and my knee reflexes look a bit brisk to me, but at least they are symmetrical, and they look the same as they did two years ago. The only time my reflexes have been properly examined was with the first "regular" doctor.

Before the second EMG I was super anxious about cramping and my reflexes, but when I went to the appointment the neuro jumped straight to the EMG, and after he said it was normal I was so relieved that I forgot to ask him about the cramping and the reflexes.

With the stories I've read, it seems like people with ALS that are very young, like 25 and under, seem to have relatively fast progression, with only a couple of months from first symptoms to diagnosis. Can anyone tell me if that is a real trend or not?
 
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lgelb

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Asked and answered. You have health anxiety against two normal EMGs. Feel free to request and post the de-identified reports for comment if it helps you. It is always a good idea to keep your own reports on file, in any context.

Three years in, if you had an MND there would be way more evidence than twitches, any abnormality of reflexes, and cramps. You literally haven't presented anything to worry about, but you have presented a textbook case of mind over matter.

If whatever you are doing/whomever you are seeing for your health anxiety isn't helping enough, find different resources -- a far more fruitful project than chasing a disease you don't have and that everyone here who does would happily trade for your good health. You might also consider bodywork that elongates the muscles, like ballet, swimming, Pilates and tai chi.

As for the speed of progression, there is no progression applicable to you because you don't have ALS or anything close.

Best,
Laurie
 

rasmus

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Thank you Laurie. To be completely honest I'm not even sure if an "official" report for the second EMG exists since it was kind of done "off the record" after hours by a neurologist friend of my father, who didn't even charge anything for it. But he seemed very knowledgeable on the subject, and he did say that he knows what ALS looks like, and this isn't it. The visit was overall very reassuring, which is why I was able to not worry about it almost at all for over a year and a half, but then came this cramping thing, which made me anxious again.
I will refrain from posting here again, sorry for wasting your time.
 

rasmus

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Sorry to be back again but this is really freaking me out. I've recently been experiencing what I think is urinary urgency, I constantly feel like I have to pee but when I got to the bathroom there's only a little. I've read that this could be an ALS symptom, something to do with the muscles of the bladder contracting involuntarily.
I have also been watching my tongue in the mirror, and when I push it out so it's like "semi contracted", it looks like it's quivering, kind of like the "bag of worms" appearance I've read about. However when the tongue is completely relaxed it looks pretty normal, with only "regular" twitches ever few seconds. Also when I push it out as hard as I can and the tongue is completely contracted, it appears to be staying still. Do you think this is significant? I've read that tongue fasciculations are diagnostically more significant than others. I don't think I have any bulbar symptoms, sometimes I feel like my speech gets slurred but nobody else has commented on it and other times I can talk normally. Iremember worrying about this same thing 1.5-2 years ago, but I can't say for sure if the twitching in my tongue was similar back then or not.
The cramping and twitching have not gotten any better, currently my back and neck are very stiff and my upper back often cramps when I lay on my side.
 

lgelb

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You haven't mentioned anything that anxiety doesn't contribute to, especially in young guys.

Repeat after me: two normal EMGs, no clinical weakness, three years in.

Try to do something as per above, that will make you feel better. Posting here won't.
 

rasmus

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Okay, it's just that I was under the impression that twitching in the tongue is clinically significant. I've read about a couple of neurologists talking about it. That combined with everything else makes me feel like I keep getting new symptoms no matter how I try to ignore it.
 

Nikki J

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The issue of the tongue twitching fallacy is addressed in the read before posting important post at the top of this subforum.
 

rasmus

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I've read that, but I'm not sure I understand it perfectly. So to clarify, tongue twitcing when the tongue is not completely relaxed is not important if there are no ALS-specific fasciculations when the tongue is relaxed?
 

Nikki J

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The tongue has to be relaxed to begin to assess it but the point the doctor was making was that relaxed or not tongue fasciculations are almost always benign. His original statment was taken out of context as he was speaking about someone with documented ALS originally
 
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