Getting worse!

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

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Re: Getting worse!

Postby Brummer on September 27th, 2012, 4:12 am

@Chrissi: did you ever noticed "kribbeln" in you feet?
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Re: Getting worse!

Postby Jonny32 on October 2nd, 2012, 4:43 am

Meine Zehen bewegen sich auch, wenn es mal stark zuckt im Fuß...
Deutschlaaaaaaand, Deutschlaaaand ;)
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Re: Getting worse!

Postby Brummer on October 5th, 2012, 12:21 am

I have some new symptoms that are scaring me. My fasciculations are very bad but they alway were. Now I feel something in my feet that feels like the vibration of a mobile phone. It is very rhthmic (pusative) and feels like electricity running though my feet. I am afraid that this are fibrillations because I can´t see twitches only feel the vibrating and there is no way to stop them. Did anyone of you ever noticed that? I hope that you can understand my description. My English is not so good. I read a lot about ALS and there is always mentioned that facziculations can also be benign but fibrillations never. I´m now very afraid that these vibrations are fibrillations because I can not see them.
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Re: Getting worse!

Postby jerry2 on October 5th, 2012, 12:41 am

You can not feel fibrillations. What you have is called (by me) buzzing sensation, I've had this few months in my inner arch. It buzzed for a second than stopped for a second and so on and on. Drove me crazy. But eventualy now I don't have it... in the foot at least, now my left thenar in hand (thumb muscle) is doing the same.

It is sensory, it is not twitching. May be linked to neuropathy but never ALS. Appreciate the buzzing as it takes you away from ALS, as this symptom points you away from it even further.
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Re: Getting worse!

Postby Brummer on October 5th, 2012, 1:30 am

Hi, thanks for your answer. If I say "rhythmic" I mean that it is like someone turn the light on and off. 5 seconds on, 2 seconds off, 5 seconds on. It is this regularly. Do you feel the same? Are you sure that this vibration has nothing to do with fibrillation? In the definition of fibrillation is always mentioned that single muscle fibres are firing and it feels like this. Like something is firing electric impulses in my feet.
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Re: Getting worse!

Postby wjjw on October 5th, 2012, 12:32 pm

Jerry is right. Those "vibrations" are just another form of high-frequency twitching. I used to get them frequently in my thigh muscles. Literally thought my cell phone was vibrating in my pocket and tried to answer it--many times. No big deal.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Getting worse!

Postby Brummer on November 2nd, 2012, 9:15 am

Hello everyone, my toe movements on the right foot are so bad today. I don´t feel the twitches but my toes are moving so bad. It is not a short movement. It seems to be more like a spasm. I´m so afraid of it. It also happens while standing and it drives me crazy because this is totally new for me. Is this a bad sign?
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Re: Getting worse!

Postby bobajojo on November 2nd, 2012, 9:28 am

Brummer,

No, this is not a bad sign at all. My pinky toe on my left foot moved for a solid 4 months. My big toes pull to the side many many times a day. I also get a downward pulling in my middle toes. All BFS. -Matt
Over 10 billion twitches since May 2011.
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Re: Getting worse!

Postby Brummer on November 2nd, 2012, 10:45 am

Hi Matt, are you really sure this is nothing serious. My toe movements look like cramping sometimes but without any pain. The toes move slowly and sometimes they don´t get into the same position than before. I don´t really know how spasm look like but I heard, that this can´t be ruled out with an emg and is an upper motor neuron sign. The normal movements I know from my twitches are fast and short and these are different. Thanks for your help.
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Re: Getting worse!

Postby raindog on November 2nd, 2012, 12:52 pm

Brummer i get these all the time, its like my toes are playing the piano , definately spasm , i think mine could be related to lumbar root compression. How is your back? I never knew i had lumbar stenosis till i had the MRI and still dont get back pain.

Nothing nasty imo.
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Re: Getting worse!

Postby Brummer on November 3rd, 2012, 4:42 am

I don't have any problems with my back and the MRI showed nothing. Is this kind of toe movement then related to a neurological disease?
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Re: Getting worse!

Postby SuziQ on November 4th, 2012, 10:07 am

Brummer wrote:I don't have any problems with my back and the MRI showed nothing. Is this kind of toe movement then related to a neurological disease?


No, because with neurological disease, there is NO movement; only profound weakness and inability to walk, swallow, stand, breathe, speak, or control your bladder/bowels. Movements of the toes and fingers in a person who has already been fasciculating for 8 years is classic, textbook BFS.

Blessings,
Sue
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Re: Getting worse!

Postby jorge on November 5th, 2012, 11:25 am

Brummer, try not to worry so much about these strange symptoms because focusing on them can make them worse. I am into BFS for more then a year and I also have these buzzing sensations on my feet and legs. When the buzzing started I freaked out too, but they are “benign”. My toes also move by themselves, but only in moments of emotional stress. Now I just ignore them. There is also the pull on the inner side of the feet that feels like a pre-cramp. It is all part of the BFS circus. All my neurological exams are clean.
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