New on this forum - My experience

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New on this forum - My experience

Postby bgr on October 31st, 2013, 8:59 am

Hello,

My name is Bruno and I'm from Brazil. Thanks for adding me to this group.

I started having fasciculations for a little over a month on my left arm, only one muscle, the brachialis. When it starts, it lasts about 24 hours. It calms down slowly until it finally stops. In the past month I had about 8-10 events. The fasciculations are very strong, and very unconfortable, easy to see. Right now seems like any bigger efford, like lifting my 1yo son, or stretching will trigger fasciculations again. I feel a little stiffness or cramping and then fasciculations for hours.

In the beginning I didnt worry at all. I thought It was because I fell a sleep with my 1yo son laying his head direcly on that muscle. After a had 3 events in 10 days, I decided to search about fasciculations on google, and like many stories I read here, I was in panic. I know I always had little twiches all over before, I think everyone has them. I still have them, maybe a little more now because my level of anxiety went up a lot. But the fasciculations on my arm are completely different. Haven't noticed any lost strength anywhere.

As soon as I read the google articles on ALS, I called my physician right away. He tried to tell me not to worry, but I said I wanted to see a neuro. Went to the neuro last week and all tests were normal. He asked for an EMG, and I did it yesterday, all clean, except for fasciculations on my brachialis.

I already had a certain level of anxiety, and I thought I was doing very well. Panic only came after google searches. Everything is still very recent and even thought my doctors think that I have nothing to worry right now, I cant move on. Its just really hard.

Good luck for everyone!
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Re: New on this forum - My experience

Postby mwagner on October 31st, 2013, 10:30 am

Bruno,

You're so classic BFS. In fact, it doesn't seem like you twitch all that much. And so many of us had this start when we had young children (my son was 2 when this started, a little over 2 years ago). I think lack of sleep and stress might factor in on why we twitch. Even though we're all so happy to have our children, being a parent of a young child is very exhausting and stressful. When you mentioned you thought your arm twitched because your one-year old fell asleep on it, I truly think that's the reason! It started the twitch (irritated your nerve), and then tiredness, etc. fueled it to keep going.

Like you, I think I have always been "twitchy". Like you, I wouldn't have thought too much about it, but I ended up googling it.

Congratulations on your good test results. You should relax, get this twitching off of your mind, know you can come here for support, and enjoy that little one of yours!

Mitra
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Re: New on this forum - My experience

Postby bgr on October 31st, 2013, 10:57 am

Hi Mitra,

Thank you very much for the support answering my post.

Before this twitching episodes on my arm, my stress and anxiety levels were certainly very high, lately my routine has been hard on me. I just thought I had it under control. I have 3 kids, 1yo, 4yo, 7yo. The week the twitching started, my 4yo daughter had a pneumonia for 2 weeks. Very short nights of sleep. I think thats why I fell asleep with my 1yo on my arm for quite some time. But it is still hard do admit that these fasciculations are just stress and anxiety. I had to find an answer. They last so many hours, and are so strong, it starts driving me crazy. And I'm still fighting to keep calm. My doctor prescribed Clonazepan, and I've been taking for the last 3 days. I think its helping. But reading the posts here really makes me feel much better.

Bruno
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Re: New on this forum - My experience

Postby Yuliasir on October 31st, 2013, 11:34 am

Hi Bruno,
but practically you say that your daughter had pneumonia for two weeks before twitches had started, and you still have any doubts that your twitches are caused by stress?
You had not sleep and had been surely worrying for 2 weeks... and you do not believe there is an excitation zone in your brain caused by lack of sleep and excessive worry?

holy cow, stress causes so many strong effects... I can tell you that I had three days lasting edema on my lips becasue of stress, I had seen people losing voice due to stress, my own daughter becomes half-blind when stressed, etc. etc.

Stress CAN cause twitches. my own last for two years already... So are yours and yu would feel much better if you would try to recover a bit and do not think that you are doomed.
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Re: New on this forum - My experience

Postby bgr on November 6th, 2013, 5:15 pm

Hello again!

I need a little help as I'm still very anxious.... I've been reading a lot this forum and seems like my experience is a little different then most of what I read. I'm trying to find more people who has experienced something more similar to me.

My fasciculation is still in only one spot, only on my brachiallis (under the bicep) of my left arm. I feel that my arm is sensitive to any efford. If I keep my arm on rest it will not twitch for days. But if I hold any weight, like my 1yo son, or if I stretch my arm, I first start feeling some stiffness, maybe cramping, and if I dont stop using my arm, it will start the fasciculations. Once it starts, it lasts at least 24 hours, twitching like crazy, non stop, very strong fasciculations, very visible. I have to stop using my arm and wait 24 hours to stop and it calms down slowly. Its been like this for 6-7 weeks. I've been trying not to use my left arm, so I can get rest. But I dont see the fasciculations moving, I already use to twitch here and there, but my arm is a completely different feeling. Anyone has similar experience? like having a muscle sensitive to little effords? Little stiffness and fasciculations? Only one muscle?

Like I said before I had a normal EMG and a normal clinical neuro exam 2 weeks ago.

Thanks again for the support
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Re: New on this forum - My experience

Postby Anxious guy on November 7th, 2013, 2:54 am

Bruno, try not to worry... I have had a very persistent twitch on my tongue tip that is now aggravated by certain movements or when saying certain words... So that's very similar to you as in if I don't move my to gue at all it will not twitch ! It's been 7-8 weeks so far ! Yesterday was a good day as it didn't twitch much but the day before it went all day and the day before that was kinda good ... So that's a couple of good days in 8 weeks...
Secondly I have a twitch on my right tricep that's been constant for about 2 weeks, I mean constant if I watch it I can see it slowly tensing and relaxing etc and its hard to feel and other times its a proper fast twitch that I can feel, my arm feels kinda achey but I think it's because the muscke has been twitching non stop !
I would do like 20-30 press ups and lift things to check strength as I'm worried due to health anxiety but I have read other people not only get achey but they get cramps with BFS ...
Try to lower your anxiety and relax a bit... Do you get any random body twitches at all ?
Last edited by Anxious guy on November 7th, 2013, 7:00 am, edited 1 time in total.
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Re: New on this forum - My experience

Postby Yuliasir on November 7th, 2013, 3:23 am

well, what you describe in your update post seem to be a trauma, probably tunnel syndrome. I would advice to talk to surgeon, they are more smart in detecting traumatic condition. Overreactive muscles are generally part of our picture but you may have also a small local trauma on top of it.
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Re: New on this forum - My experience

Postby bgr on November 7th, 2013, 4:34 am

Anxious guy, I do get twitches in other places, but I used to get them before. I think very normal, just a little twitch here and there once in a while, like just one twitch. Not many hours of non stop twitching, like I'm having in my arm. Certainly with my anxiety level up I get a little more twitches, but it doesnt feel related to what I have in my arm.

Yuliasir, I'm not sure if I had a trauma in that place, I know that a certain point I felt my arm sensitive enough to not let my son lay his head on my arm. But what came first? the chicken or the egg? I dont know if that spot got sensitive because my son was laying there too much, or if it just got sensitive for other reason and I couldnt let him lay there. When I went to my neuro, I told him this and it seems like for him it doesnt matter how the fasciculations trigger. I felt like he did not give importance to this detail, that any effort will trigger my fasciculations. What kind a surgeon do you suggest? Neuro surgeon?

I read a lot of people talking about hot spots, but I also read them saying that these spots move around. And that did not happen to me. I get it in only one specific spot and in a specific situation. I was hoping to see someone with a similiar story......
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Re: New on this forum - My experience

Postby bgr on March 18th, 2014, 12:34 pm

Hi guys!
I'm back for a feedback on my experience with twitching muscles.
Now it's been almost 6 months since it started. I think it got a little better, but I still have twitches only in the same spot. Only on my left arm, on my brachialis muscle. Since this started I dont have this everyday, in the beginning it was happening a few times a week, now I only have it in average once a week (the most time I had without any twitches was 12 days). Once its starts twitching, it will go on for several hours, the most I had was 36 hours straight even sleeping. The twitches are VERY intense, big sequences of small super fast twitches (almost like an electric shock) between big strong twitches, but with no time at all between them, every second. The big strong twitches are visible, the super fast small ones are not visible, but very bothersome, and anyone can feel the small ones putting their hand on my arm. My twitches usually are triggered by a certain movement, like lifting my son to put him on a chair, or lifting a heavy piece of luggage. Before it starts I feel something like a cramp on that muscle and then it starts.
The twitches bother me a lot, after a couple of hours my arm gets VERY sore, and its hard to do my daily tasks at work or at home, its really getting on my way and doing bad for my work. Sometimes after a few hours I feel pain in my shoulder or elbow or both.
I've been going to a neurologist, and he is treating me only for anxiety with clonazepan, I dont feel like he is trying to look further for the underlying reason for this. I kinda believe there is something wrong that could be treated, but I get no answers at all. I only had one clean EMG done in the beginning (few months ago), did not repeat lately, blood tests all normal, he did not ask for MRI or anything else. Also I cant find anyone describing something similar to this. Usually people say they have twitches all over or group of muscles, or they say that their hotspot has changed or moved somewhere else and the description of the twitches are not the same, usually dont seem something strong that gets on your way like mine that make my arm so sore. Mine did not change at all, except for the frequency that it happens that went down from a few times a week to once a week in average.

I dont know if it is related, but I also feel a little cramping on my left leg (thigh and calves). Nothing that bothers, just a very little cramp feeling that doesnt hurt at all. Can live with this easily.

I hope to hear some similar experience, or any ideas on how to handle the crisis moments. Something to relief my arm when it gets sore and starts getting on my way at work.

thanks for all support here, this forum is a really good place for support.
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Re: New on this forum - My experience

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