extreme worry and anxiety over focal twitching

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Re: extreme worry and anxiety over focal twitching

Postby Yuliasir on April 23rd, 2014, 11:12 pm

by the way, about panick attacks. I had ONE for now, it lasted 10 seconds maybe but I was still under its effect for about 4 month later (mood change, fears buildup etc.) - and I am USED TO FEARS since 6yo! So panick attack really means you need a psychological or even psychiatric help to cope with and it really makes you another person.
it is devastating experience.
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Re: extreme worry and anxiety over focal twitching

Postby rutra80 on April 24th, 2014, 4:20 pm

My point of view on that matter is that fasciculations are not headaches which are very common and in 99% harmless. Long term fasciculations may be related to BFS, but all the other related diseases are serious, they are rare and should always be checked. A doctor who ignores this fact is an ignorant. IMO neuro exam and EMG should always be mandatory in case of long term fasciculations. Even for the peace of mind of the patient. I really can't understand why there's hesitation - what do the doctors lose? Time? They have like what, 2 patients with fasciculations a year? Money? And how much money is worth your time, often years of extreme anxiety? It's outrageous.
I saw an excerpt of some paper from 2012 (some neurology periodic AFAICR) where it is stated that BFS should be treated as stable after minimum 3-4 years. It was saying that from a number of test cases (over a hundred IIRC) a couple of patients did develop MND after a couple of years. To not increase your anxiety level off scale I'll add that I read somewhere on this forum a debate about similar experiment (maybe it was the same one!), and it was stated that these few patients had abnormal EMGs since beginning.
Anyway, these conditions are far from clear and obvious, and should always be checked as good as possible.
My grandfather died on ALS. I have fasciculations since winter 2012/2013...
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Re: extreme worry and anxiety over focal twitching

Postby jcmommie on April 26th, 2014, 10:20 am

leaflea wrote: So, I this is the advice I give/gave myself...use that time to figure out how to live your life, either way. If you have the disease...what to do and how to handle it... and if you don't, how to be sure your never go through this fear again, because surely another symptom will present itself that if given enough focus and attention, will seem potentially deadly. I know this is the worst, and other fears have paled in comparison to this. But, there is a lesson and a silver lining in this. In psychology, it is called "in vivo exposure." We have now been exposed to to worst possible health fear and if you ask me, any cancer fear seems like a walk in the park. We are facing down our worst fears and hopefully learning how to cope with it. I just finished reading "A New Earth" by Eckhart Tolle and highly recommend it as a general approach to a serene life. I can hardly wait to read his first "The Power of Now." Reading etc. is something productive you can do in these months of waiting to better yourself -- No Matter What. Sure beats sitting around obsessing about a disease we do not have.

Thanks for this! I was sitting here this morning trying to figure out how I was going to handle another round of tests and waiting. The next couple of months will be really hard, but I want to do it better than I have with past scares. I think I have to get to a place of "either way." My husband tells me that my fear of ALS is eating me up. I know he's right. It's just that everytime I drop my guard and have a time where I am not thinking about it, something else happens. Something needs to change in my mind that I will be okay no matter what these new tests say.
Just keep swimming...
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Re: extreme worry and anxiety over focal twitching

Postby German2 on April 29th, 2014, 12:52 pm

rutra80 wrote: IMO neuro exam and EMG should always be mandatory in case of long term fasciculations. Even for the peace of mind of the patient. I really can't understand why there's hesitation - what do the doctors lose? Time? They have like what, 2 patients with fasciculations a year? Money? And how much money is worth your time, often years of extreme anxiety? It's outrageous.
I saw an excerpt of some paper from 2012 (some neurology periodic AFAICR) where it is stated that BFS should be treated as stable after minimum 3-4 years. It was saying that from a number of test cases (over a hundred IIRC) a couple of patients did develop MND after a couple of years. To not increase your anxiety level off scale I'll add that I read somewhere on this forum a debate about similar experiment (maybe it was the same one!), and it was stated that these few patients had abnormal EMGs since beginning.
Anyway, these conditions are far from clear and obvious, and should always be checked as good as possible.


Has anyone else read this survey? What is your opinion to this? Can one EMG rule this out? And if so, why should there be a further observation? I am asking this to get more safety in this matter...
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Re: extreme worry and anxiety over focal twitching

Postby twitchyvol on May 5th, 2014, 2:34 pm

From what I understand from this forum, the twitches rarely precede any weakness. Rather, it is the other way around -- weakness and then the twitches. I do recall the one paper, where twitches were observed in one limb of an *** patient, but that patient already had weakness in another limb if I recall correctly.
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Re: extreme worry and anxiety over focal twitching

Postby leaflea on May 5th, 2014, 10:56 pm

twitchyvol: I am not certain which paper you are referencing. Unfortunately, it seems you can find a paper to support anything. There are unusual presentations of course, and they usually do get written up because they are unusual -- not because they are typical. Becareful of these. I do know for sure I read on an ALS site, not the forums, but a general site that twitches can be an early symptom. I went into a tailspin!!! But, as I read further, it very clearly stated that the twitches happen in the same limb where the weakness already is. Whew. They might happen together, but EMG would pick this up even before the weakness was obvious or twitches started. The site spoke clearly against any widespread twitching. There were many patient stories...I am sure a resource site for all patients with the disease. Surely, if this was not accurate, one of them would have had this misinformation corrected. By the way, I strongly advise not googling any of this. It creates undue stress and anxiety which helps nothing. You may tell yourself it offers reassurance, but that reassurance is short lived and addicting. Next time you need more of it, and then you need it faster...that is how it goes. Try not to go into that trap. I have SO been there.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: extreme worry and anxiety over focal twitching

Postby German2 on May 6th, 2014, 12:53 am

Dear leflea, with that it could clearly be stated, that in any case an EMG in a twitching limb it would be obvious if there is s.th. not benign. In that case most of the people here in the forum should not bother about having s.th. serious. Correct me if I am wrong?
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Re: extreme worry and anxiety over focal twitching

Postby leaflea on May 6th, 2014, 9:41 am

I think you are correct. EMG is very sensitive and specific for the bad stuff. Quite reliable. If twitching is already present and happening an EMG will show troubling signs in any limb usually, and certainly in the symptomatic limb. Twitching is a "lower motor" symptom which is what the EMG will pick up, along with maybe even sub clinical weakness if there is such a thing.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: extreme worry and anxiety over focal twitching

Postby mjd83 on May 10th, 2014, 10:56 am

Johnson 84,

I'm there with you. My primary concern is also a very small twitch that I cannot feel that occurs in about a square inch region of the (inside part) of my left calf... and almost always in the exact same place. What scares me even more, I've been able to trigger it (and a similar one in a similar spot on the right calf) by touch. This is my biggest cause of anxiety at the moment. It looks just like a very small twitch that I usually cannot feel, and sometimes I can't even find it (which means that maybe it's not going all the time.)

I haven't noticed any weakness in that leg or the other, and even jumped rope for 1 minute the other day and occasionally walk on my toes or heels just to try and prove to myself. It is the first question that I intend to ask my doctor.

Does this sound similar to what you are experiencing? I am 31 and if your name is any indication, you appear to be 30.... so I guess we can take some comfort in the fact that the likelihood of two 30 years olds being on here at the same time worried about the exact same thing both having a very rare aging disease like *** would be a rare occurence indeed.
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