Twitching and pain

[vlaf]

I am a male, 40 years old and got a wife and 4 beautiful kids. My main language isn`t English, but I hope you can understand me anyway.
I am really afraid I have got als. It all started in dec 2010, I ´ve got a terrible pain in my left foot, (“under” the foot) so I couldn´t walk or anything and painkiller-pills didn´t get rid of the pain, but after a week it all went away.
In February 2011 my left forearm started to twitch, a couple of days later my left upper eyelid also started to twitch, then after another couple of days my both calves started to twitch. I then got really scared of als, after reading of all symptoms on the Internet. Then I had a depression and went to hospital for 2 weeks and started getting pills for it. For a couple of weeks my index finger on my left hand started to be numbness, also some fingers on my right hand got numbness. Often when I wake up in the night I can feel this numbness. I can also feel pain in my arms, fingers, left calf, left foot as well a tingling under my left foot. My sleeping is ok, but sometimes during night I am warm and sometimes I am cold, don’t know if it depends on my depression.
I can also feel other twitches all over my body, or if i am imaging them, but i cant feel them so often, for examples in my butt, thighs, lips and my back. During only one day I had some twitching on my left hand, between index finger and thumb but it stopped. All my symptoms often comes after exercise, for ex walking, or just streching my legs in my bed when i wake up in the morning, or using my arms and hands, my eyelid twitch also comes in exercise, which is a bit weird. I have done MR and EEG, EMG tests in my whole body–nothing have been found, everything ok and my neurologist says I don’t have to be worried about als, but I can´t believe him, my symptoms are for me so als, but I have no weakness. Can you please answer my questions:
1.Twitching in als, are they constant or are they also coming after excersice?
2.Is EEG, EMG-tests 100%, or can I have als anyway, meaning that it´s not visible in the tests yet?
3.Can ALS be so aggresiv, meaning could it be spread to my different body parts so fast ? ( during 4-5 weeks), or does als just starts in only one part of the body, feeling twitches, weakness and then it goes for another?

I am so worried I can´t go to work or be with my kids in a normal way, afraid of dying in als, please please help me

[vlaf]

My upper lips also started to twitch from yesterday, I forgat that twitch, he he

[johnnythejet]

First, go to the root of this forum (Symptom Management) and read the post near the top titled "BFS in a Nutshell". This will answer a lot of your questions and concerns about twitches and the difference between BFS twitching vs ALS twitching.

Second, listen to your neuro.

Third, based on the description of your history, it sounds to me that your twitching is benign and not caused by ALS. I would bet my house on it.

[vlaf]

Thanks, I will read the nutshell, I think I have done that a bit, but I read it again. For calm me down I wanted to post my symptoms for getting some answers from you experts, I am new at this forum you know.

[dARR]

Hi Vlaf,
It sounds like bona fide bfs. There are about 20,000 stories just like yours in the archives.

You ask very specific questions that I cannot answer, but your doctors can! And they cleared you so....you can be 100% sure you don't have als the day a doctor says: YOU DONT HAVE ALS. Not after a year or a decade but right now.

Its a road well travelled and im sorry that you are so afraid, I was too...but believe it or not it will pass. How soon you move on is up to you and how fast you can deal with your anxiety.

p.s
My hands were constantly numb in the mornings or if I awoke at night at the beginning of my symptoms...not unusual...I see nothing in your story that would make a doctor even begin to think about thinking of pointing toward als.

[vlaf]

I am really thankfull for your answers, I think I was in big need of some personal advices from real peaple like you all in this forum. I have once againg read the whole BFS nutshell and I am more relaxed, at least right know.
I have promised myself never surf on ALS-forums on Internet anymore, instead I will only check with you on this forum. I hope I can go back to my work in May, I hope I can be with my kids in a normal way soon.

I will for sure come back with more symptoms-questions, I hope its ok

[Barbie800]

vlaf,

Please, Please trust your doctor on this one. Your story is just ike everyone elses on here including me! Don't put yourself through the torture. Your tests have been normal and your doctors say it's not ALS so take that and run. I know its very hard but when I think of the self torture I put myself through, I really hate to see anyone else do the same thing over a benign condition.

~Leslie

[mommylondon]

You really shouldnt try to compare ALS twitches to BFS twitches, they can share similarities. To answer your second question, nothing is 100% but an EMG is designed to pick up nerve damage, if it is clean you dont have any, its that simple. Also an EMG can pick up ALS up to 2 yrs before a person even gets one symptom. And your third question, NO, ALS would not spread all over your body in that short of period of time, its progressive but thats a bit too fast even for ALS. Please listen to the advice you have been given from others, dont distance your self from your family. Dont miss any precioous time with your children. They are only this age once, dont let a benign condition rob you of the time you have with them. I had a very hard time being around my children as well when my BFS was at its peak, they made me more nervous and I also could not look at them without feeling like I may not get to see them grow up. This fear crippled me. I can never get that time back. Now I do my best to play with them any chance I get. You do not have ALS, you sound like every other BFSer on here with some horrible anxiety sprinkled in. The anxiety is treatable, and when you do that, you will notice your BFS symptoms lesson a great deal.


Take care and feel free to post anytime you want.

Robynn

[vlaf]

I am almust crying in happiness when i read all your answer. Today i am more calm, my youngest child is only a 4 days old baby boy and i am trying my best to be with my family in a normal way. Once again thanks for your support

[vlaf]

Some questions that i wanted your advice on.

Yesterday i was doing some pushups training, some leg/feet training and then a short walking training. Today my pain is more intensive in my soles of my left foot and my left forearm, inkl my left indexfinger.
Since I was 25 years old I have always been a training person, meaning running (2-3 miles a week) and some easy body training (but not a gym guy). But since I´ve got my problems (dec 2010) I haven´t been training anymore, because I am afraid of the pain and twitching which always are increasing after exercise.

1. Shall I stop with all training ?
The reason I am doing my training has always been a better psychological feeling. If I start with the training again, maby I can get a proof if my muscels still can grow, meaning exclude thoughts about weakness or atrophy, I have no such signes today, but if i can build up my muscels "again" it´s a proof they are working well. Am I thinking correct in this matter or shall I stay relaxed all days, at the same time, when the pain increases it effects my anxiuos...so I don´t know whats the best to do?

2. The pain according to above description are staying in my body for 1-2 days after the exercising, then the pain goes away, but my twitches are "always" there, they appear just when I am moving my muscels, or after that. If I am sitting still, resting my body all days the twitches decreases. Is this a BFS typical?

3. After excersice I have also got a feeling that my stomach pain, incl diarrhea are increasing. I can also add that I´ve always had a anxious stomach in my life, and it was much worse during 2010, before I´ve got my "BFS-symptoms", probably depending on stress and, yes maby because of my excersising. Is all this BFS typical? I know a bad stomach is a result of stress, anxious, but once again I am certain it´s also is connected to excersing as well, someone experience the same problem?

For last, your answers to me are helping me a lot, including reading all other information about your symptoms, which many times are the sama as mine. I have felt much better in my mind the last days, my anxious have decreased a lot, not so very afraid of als at the moment. I will have a new contact with my neuro on monday next week, have you any tips of questions I shall ask him? One thing I will ask him is about my EMG-test (once again), if its really safe or if als-symtoms can hide during theese test. I am really confused when I´m reading of people (at this forum) who are taking several EMG-test all the time, why are they doing that, anybody knows why?

[mommylondon]

Hello. To answer your first question, "NO" do not stop training, or moving, although maybe take it down a few notches, and very slowly build back up. When you have BFS, or with some BFSers, your muscles tend to fatigue much easier and this is one of the reasons you are uncomfortable. The answer to your second question is "YES", what you are describing is very common with BFS. Your third question, a lot of us tend to have IBS (Irritable Bowel Syndrome) along with our BFS, I'm not sure if the two are connected or not, but regardless, it is quite common here as well. Maybe when you exersise, you get your adrenaline up, and I know adrenaline has an effect on IBS, so that could be why you are having that problem when you work out.

About your EMG, You can feal very reassured when it is clean. As I stated, EMGs are designed to pick up nerve damage or nerve death. If it was clean (which yours was) then your nerves and muscles showed healthy, normal, function, and you can be sure that you do not have ALS. Its ok to let that fear go now, and focus on recovering from your BFS. You can not begin to recover from BFS until you accept that IT is the cause of your symptoms, and that ALS is not. You have to let the ALS fear go to begin to recover. IMO, there is no reason for people on here to be getting several EMGs, one is enough. But, some people just have a harder time accepting their BFS and continue to believe that there is something far more sinister causing their symptoms. In all fairness, most people on here are good after one EMG, there is only a select few that I have read about in the archives that refused to listen to their doctors and continued to get more EMGs, they are very unnecessary and just cause the individual more stress and anxiety on the body which in turn, only increases their BFS symptoms. Its a horrible, vicious, cycle that you would be wise to avoid.

I hope this helps, and if you have any further questions, please dont hesitate to post.

Congratulations on your brand new baby, cherish the moments.

Take care

Robynn

[vlaf]

Thanks once again for your respons Robynn.
I will continue with some easy training, for examples walking and some light body workout.

[johnnythejet]

First of all, don’t stop training unless your doctor believes there is some other reason to stop. BFS is harmless and exercise is essential for good overall health, and reduces stress as well. If your doctor says you should be excercising, then DO IT. Don’t let the aches, pains, and twitches stop you. We all get them.

Talk to your doctor about the stomach pains. It could be anxiety. Sometimes I feel nauseous after an intense workout so I try to not work out quite as intense.

As for the last question about multiple EMG’s…..That is a VERY good question. Here are some other good questions:
Why do many people measure their calf muscles to try to determine muscle atrophy even after cleared by a doctor and clean EMG?
Why did I believe I had speech problems and would repeatedly talk to myself alone during a car ride trying to determine if my speech was getting worse?...even after cleared by doc and clean EMG.
Why, after being cleared by a doc and clean EMG, did I get sick to my stomach for nearly a year every time I saw the term “ALS”?
Why did I not magically snap out of my nightmare the moment my EMG results came in clean?
The fact of the matter is that anxiety is a very powerful and evil thing. It drives people to do lots of irrational things. The next question is, “What will it make you do?”
Or better yet, “What will you LET it make you do?”

[mommylondon]

Thanks once again for your respons Robynn.
I will continue with some easy training, for examples walking and some light body workout.

That sounds like a very good plan viaf. What Johnnythejet said about exercise is very true. Exercise is very important, especially for people who suffer from anxiety. I was dumb enough to stop moving when my BFS hit hard, and I have been paying for it ever since. My legs are always tight like my muscles shortened or something over the months of not moving much. So that is why I stressed to you to not stop moving.

Take care and let us know if you have any more questions.


Robynn

[vlaf]

Thanks again, I will do some exercise like I said. One more stupid question. If I will take up the running excersice as well, and IF I will get so much pain in the soles of my left foot (under the foot) so I cant walk because of the pain. It happaned me in december lika i described before (all problems began from that moment). My question about this, IS this ALS-typical that you get such pain that you cant walk as a first symptom?, I was in need of crutches during one week when it happened, but I haven´t experience such pain after that though only acheing ang tingeling at the same spots.

P.S Lots of ALS questions from me, but I am not SO worried anymore, You have really helped me there, including that you have convinced me that I shall trust my neuro....BUT I can´t STOP seeking answers of my symptoms...