Getting worse!

Information about how to manage or reduce the severity of BFS symptoms

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Getting worse!

Postby Brummer on September 17th, 2012, 8:23 am

Hello, My name is Cindy and I´m from Germany, so please notice that English is not my mother language. But I need advice and there is nothing comparable with this website in Germany. I twitch for 8 years now. 24 ours a day in my calves and feet. I went through all the fears about ALS most of you know. But the years passed and I got used to the twitches. They never stop and sometimes gets worse in cases of stress or illness. All normal so far. A few weeks ago I woke up in the morning and my left upper arm twitched like hell. Not only one single hotspot, but every time another part of the upper arm. That scares me now because I´m afraid that this a sign for ALS. No twitches on the other arm. Of cource I have twitches all over my body, but only sometimes and never so prominent than in this arm now. Only my calves are twitching 24 hours a day. And now my arm does the same. Did anyone of you made the same experience. I am afraid that all the ALS fears will come up again. It needed a lot of time to get over them and I don´t want to live with this again. Thank you so much!
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Re: Getting worse!

Postby jerry2 on September 17th, 2012, 9:15 am

I think personally that after 8 years of constant twitches you can not have ALS. You are a twitcher, sure, but not ALS patient. If you twitched for 8 years the twitches were in your hand also from time to time? Twitches seem to change during the passage of time, mine do also and I am 1 year now almost.

Have you been to the doctor 8 years ago? How did you overcome your fear, with time? If you can still do things 8 years later you are ok. I got twitches on the left side only and now I get hotspots on both sides lasting month or more, 24/7. So the symptoms are changing. I think if you twitch so long time and now it has changed location it is nothing sinister. Don't go again in this dark pit of ALS fear if you have no other symptoms.
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Re: Getting worse!

Postby skonen on September 17th, 2012, 10:24 pm

Jerry2 is correct. Had your fasciculations been caused by lower motor neuron degeneration associated with ALS you would have noticed significant symptoms such as weakness and atrophy very early on in your 8 year period of twitching.

You should not spend time worrying about ALS, because nothing you mentioned is even slightly indicative of such a diagnosis. As you admitted, your condition is made worse by stress, and worrying about it will only work to feed the cycle. Your twitches are not going to kill you. Try to relax, and if you need to have extra reassurance visit a neurologist who will tell you the same thing.
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Re: Getting worse!

Postby Brummer on September 18th, 2012, 4:50 am

I saw two doctors during the last years and they both told me that my problems are selfmade. The twitches are not caused by an illness but by myself. It is hard to understand why so many people have to deal with this problem and no one can give us an explanation for it. If a doctor is not able to find a cure for a disease he always tells the patients that their problems are caused by stress because they are nervous in general. If I would now visit one of my doctors they would not even test me, they would offer me an antidepressant drug to calm me down. But I am not depressive at all. It is just hard to ignore the twitches from time to time. If they get worse you automatically think about them.
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Re: Getting worse!

Postby raindog on September 18th, 2012, 10:05 am

Brummer wrote:I saw two doctors during the last years and they both told me that my problems are selfmade. The twitches are not caused by an illness but by myself. It is hard to understand why so many people have to deal with this problem and no one can give us an explanation for it. If a doctor is not able to find a cure for a disease he always tells the patients that their problems are caused by stress because they are nervous in general. If I would now visit one of my doctors they would not even test me, they would offer me an antidepressant drug to calm me down. But I am not depressive at all. It is just hard to ignore the twitches from time to time. If they get worse you automatically think about them.


My wife is a born worrier alway's anxious and suffers panic attacks , surprisingly she's never had a muscle twitch in her life. Me on the other hand... i'm so laid back i'm almost horizontal but get tens of thousands of twitching every day without a minutes let up. Ask your doctor to work that one out!! , as i think he or she are talking crap.

Back to your question and my assumption is your having a flare up maybe you have a virus or just something else thats causing the flare up , but i'm sure if its just a ramping up of twitching intensity its par for the course of your condition.
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Re: Getting worse!

Postby Brummer on September 19th, 2012, 9:49 am

Did one of you ever noticed a moving of the toes when the twitches in your feet are very bad?
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Re: Getting worse!

Postby chrissi on September 19th, 2012, 9:52 am

Jipp, seit anderthalb Jahren ;)
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Getting worse!

Postby Brummer on September 19th, 2012, 10:02 am

Ist wahrscheinlich unhöflich hier plötzlich Deutsch zu schreiben, aber ich bin froh, dass ich damit nicht alleine bin... Vielen Dank für deine Antwort!
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Re: Getting worse!

Postby raindog on September 19th, 2012, 11:17 am

Brummer wrote:Did one of you ever noticed a moving of the toes when the twitches in your feet are very bad?


sure my toes dance about like a pianists fingers playing a concerto at times. I think these are more of a spasm than a twitch.
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Re: Getting worse!

Postby chrissi on September 19th, 2012, 12:10 pm

LOL probably impolite to write in german here, but my answers are getting so monotonous that I bet most people on here dont even REALIZE that it is in a different language because they know the answer anyway :mrgreen:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Getting worse!

Postby Brummer on September 19th, 2012, 12:39 pm

Do your calves also twitch while you are standing? I can see this while watching on my feet, but do not feel it.
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Re: Getting worse!

Postby raindog on September 19th, 2012, 2:31 pm

Brummer wrote:Do your calves also twitch while you are standing? I can see this while watching on my feet, but do not feel it.


Yes and cramp
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Re: Getting worse!

Postby Brummer on September 20th, 2012, 3:28 am

Hello raindog, thanks for your answer. Should this worry me? I read in another thread that your have not only BFS but something else with denervation.
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Re: Getting worse!

Postby chrissi on September 20th, 2012, 3:38 am

No, because this is totally for plain old normal BFS as well.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Getting worse!

Postby raindog on September 20th, 2012, 5:21 am

Brummer wrote:Hello raindog, thanks for your answer. Should this worry me? I read in another thread that your have not only BFS but something else with denervation.


No you should only be concerned when you have real weakness and atrophy , not perceived but obvious weakness that you and others notice that may cause you to trip up or difficulty standing up from a chair or affects your grip and so you may have trouble holding things or fastening your shoe laces etc .

My condition maybe a little more complex than just BFS as i have some cervical and lumbar spine issues too, but i'm quite confident that its benign just the same.
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Re: Getting worse!

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