Twitching and what not [my story]

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Twitching and what not [my story]

Postby TheCBkid on April 3rd, 2014, 9:44 pm

Hello all,
This is my first post, but I've been browsing for a while.
Basically, this is my story. A few weeks ago, maybe four or five, I watched a documentary about the disease that we all feared at one point.
It is worth noting that I have actually been diagnosed as a hypochondriac. I have gone through "cancer scares" that turned out to be nothing more than extreme stress caused by....well...my "cancer scares". It is a vicious cycle. So I am sure you know where this story is going.

Here is my timeline:
1) watched documentary
2) went to the gym right after. Felt fine.
3) Next day, felt fine. went to gym again, felt a little sore at the start, which is unusual for me. Brushed it off. 30 minute run. Areas around knees very sore.
4) The next morning I wake up twitching like crazy. All over my body. Freak out for a few days. Fall into a depression. Stop eating. My life is over, what's the point?
5) Go back to college, as spring break is over (I am 20). Feeling down still. Legs are no longer sore, twitching still out of control.
6) Begin going to the gym again, destined not to stop my life. I can workout still, so I figure nothing is wrong.
7) Twitching slows down. Seems like a good thing at first, until I start getting stinging pains all throughout my body. Not a symptom of ***, so on one hand, it's kind of a relief. On the other hand, it isn't because that's not how my mind is set to work.
8) Stinging stops. Twitching has slowed down quite a bit. Seems like a good thing. However, now, the majority of twitches in my body are located in my left calf, and that is accompanied by some unpleasant feelings (Cramps, etc). I was more comfortable with everything when it was all over my body because I kind of became comfortable with the fact that "Disease starts in one spot and spreads". Now that one spot is going crazy, so, despite logic, I freak out again.

Now here's the thing. I understand twitching would be accompanied by muscle weakness or wasting, and would most likely not include pain until it was late stage.
I have been avoiding the doctor for a few reasons. The biggest reason being that I can come up with a few reasons that my body might be reacting the way it is that I should investigate (I've eaten once a day for the last 3 weeks basically. I have, at times, not been hydrated. I have not had my stress under control. BUT THE BIGGEST REASON IS the first time I ever noticed twitches in my body were facial twitches and bicep twitches over a year ago. So I almost figure I'd know if something was wrong, and that my hypo is taking over).

Sorry for the long post, but can anyone relate to me? what do you suggest?
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Re: Twitching and what not [my story]

Postby Yuliasir on April 3rd, 2014, 11:28 pm

Hi,
with your story, I think, you should not avoid doctors, just right ones - psychologist or psychiatrist, in order to clarify your realtionships with the health fears. Well, hypochondria does nto ot kill (or very seldom). But quality of life under it is miserable. And what is worst thing, many of us are doing that deliberately, as you did - by watching videos, googling, etc.

Surely you do not have ALS, you have just twitching which is extremely common, and sore pain due to the fact that all your muscles are tensed with the fear (maybe even with the fear of the fear, it often happens with us).
But you have health anxiety, cancerophobia, as you mentioned - and that is what need to be treated. You are young person, the whole nice life is ahead so my suggestion would be not waiting until anxiety disorder will break your personal relationships, career, studies or whatever else, and make a program and follow it, because usually it takes about a years to get trained for proper fear management.
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Re: Twitching and what not [my story]

Postby TheCBkid on April 3rd, 2014, 11:59 pm

Thank you for your response!
I guess I should have specified the kind of doctors I've been avoiding haha. I have been getting mental help in the form of monthly meetings (more during episodes), as well as being prescribed an "as needed" dosage of Ativan. Hypochondria has ruined my life at points (Failed four of the last eight classes I took, not including the five I'm in now).
I hate anxiety.
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Re: Twitching and what not [my story]

Postby J4son on April 4th, 2014, 1:16 am

It’s incredible how many stories we get on this board of sudden onset of widespread twitching just after some data or info on ALS is gathered from medias, TV, Dr. Google or medical books/ articles/ literature. Makes me more and more convinced that everybody has widespread twitches that remain under the threshold of awareness, until something happens and the brain for a reason or another becomes focused on it and bring them to the surface of consciousness. This “something” is usually either a true but usually limited in time and focal episode of fasciculation followed by a visit to Pr. Google, then the onset of widespread twitches and anxiety to the roof. Or Medical info collected regarding Amyotrophic Lateral Sclerosis followed by the onset of widespread twitching and then the stress and anxiety to the roof. I don’t think that muscles in a human being are supposed to always remain perfectly still and motionless like a Zen master in deep meditation over his lotus leaf, without being allowed a single quiver , tremor or shake from time to time. So usually Patterns go two ways:

A) 1- Focal and time limited fasciculation ==> 2- Google ==> 3-Awareness of some widespread twitches ==> 4- huge Stress+anxiety ==> 5- Internet, GP, Neuro,EMG, MRI, crystal ball, shamans and gurus ==> 6- Starting a Spiral of self-tests to be sure that everything is OK , which puts extra pressure and strain on the body and makes body sensations more noticeable and obvious. ==> 7- Additional awareness of more widespread twitching ==> 8- Back to point 4 to start the loop again.

Or,

B) 1- Reading something related to ALS on Internet, medical encyclopedias, Dr. House, TV news or whatever. ==> 2- Rise of little concerns ==> 3-Awareness of some widespread twitches ==> 4- huge Stress+anxiety ==> 5- Internet, GP, Neuro,EMG, MRI, crystal ball, shamans and gurus ==> 6- Starting a spiral of self-tests to be sure that everything is OK , which put extra pressure and strain on the body and makes body sensations more noticeable and obvious. ==> 7- Additional awareness of more widespread twitching ==> 8- Back to point 4 to start the loop again.


Personally it was A :)
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Re: Twitching and what not [my story]

Postby emmie.s on April 4th, 2014, 9:21 am

J4son wrote:Makes me more and more convinced that everybody has widespread twitches that remain under the threshold of awareness, until something happens and the brain for a reason or another becomes focused on it and bring them to the surface of consciousness.


I was just thinking of this the other day. I am a firm believer that EVERYONE twitches, and the mind is so powerful that some of us can actually increase those twitches by awareness. Maybe we BFSers have special powers, like we can slow our heartbeat or decrease our core body temperature just by thinking about it. Maybe we are all capable of being some sort of ninjas or yogi masters with incredible mind-body control. Yes, I've had too much caffeine this morning :D

But to the original poster, no you do not have ALS. You are just the poster child for BFS. Seriously, read some other "introduction" posts and you will see, EVERYONE here can relate to you. The fact that you have a hotspot on your calf is nothing new or alarming either, I had one there too for a loooong time. Its like the most common place to twitch, along with the foot arches. Seeing a neuro may give you peace of mind, but I can tell by reading your story that it's not necessary.
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Re: Twitching and what not [my story]

Postby Rothhaar on April 4th, 2014, 9:22 am

@ J4son:

As much as I would agree to your observation that BFS is often a result of information about ALS, I don't think that it is just a question of awareness or "bringing them to the surface of consciousness", like: "You always had these fasciculations and the only difference is that you are now aware of them."

I also thought along these lines for a while, but when cramping, pain and soreness started some weeks ago, I gave up this hypothesis. Cramps, pain and soreness are just not something that "has always been there", albeit below the treshold of awareness.

I rather think that the informations about ALS which we gather after maybe a short episode of focal twitching (in my case eyebrow twitching) cause stress and anxiety which then causes the widespread twitching. Maybe it's just the anxiety as such that causes the widespread twitching.
But it might also be a kind of a yet undescribed somatization disorder, in which our subconsciousness produces exactly the symptoms which we fear (for example, in the early days of my ALS fears I read about a woman who was diagnosed with ALS after she had visited a neurologist because of a "wild thigh twitch" in the left leg. And guess what: 20 minutes later I had a "wild thigh twitch" in the left leg).
Or BFS might be a kind of autoimmune disorder caused by our "ALS-information"-related stress and/or anxiety. Autoimmune disorders are often supposed to be triggered by stress/anxiety. For example, I acquired an autoimmune disorder about 9 years ago. It just appeared out of nothing some days after an emotionally very distressing experience.

By the way I just found a german book on the neurology of aging which describes BFCS ("Benignes Faszikulations-Myalgie-Krampus-Syndrom" in german) and speculates that it might be a less severe form of neuromyotonia.
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Re: Twitching and what not [my story]

Postby TheCBkid on April 4th, 2014, 10:23 am

So I know I said I've been avoiding doctors. But today since I have nothing to do I'm going to go to my university health center to get a clinical, just because I've heard a clinical can essentially "rule out" something major. I guess my only question would be does it HAVE to be a neuro who does it? My HC is run by Physicians, PAs and NPs. Would a clinical from these people be fine?
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Re: Twitching and what not [my story]

Postby Yuliasir on April 4th, 2014, 11:50 am

All general medical practitioners should be basically able to do clinical test for reflexes and be able to evaluate them.

usually if they willdiscover any troublesome issues (like asymmetric reflexes, loss of grip, foot drop or other sings of leg muscle denervation (checked by ability to walk on toes/heels), then they will refer a person to a neuro who will do much more detailed clinical exam (some of those tests include prickling you at the belly with a needle :) ).

But usually BFS people have excellent clean clinicals, maybe symmetrical brisk reflexes due to anxiety, and that's all.
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Re: Twitching and what not [my story]

Postby J4son on April 4th, 2014, 12:32 pm

@TheCBkid:

I agree with Yuliasir, any GP can do the job and if he has any concern (which he is not gonna have with you) he will refer you to a neuro.

@Rothhaar:

What you said is true. Not all twitches are due to the fact of simply not being aware of them prior to reading somewhere about ALS, but in some people and probably in most of us in the beginning, I believe that’s what happened. Then of course an increase in the amount and strength of the fasciculation is observed, probably due to many reasons like anxiety, stress, autoimmune reaction or other still unknown reasons. But there is definitely a link between gathering info on ALS and the severity of twitching in some people (in others it can be due to unrelated causes like a virus or smthg else.)

It is well known that muscle strain can be a cause of twitching. Lot of people on bodybuilding or gym-related websites complains about twitching. However in my opinion the mechanism of a muscle strain could have other causes than just workout, training or weightlifting. Maybe anxiety, stress, extreme concern about a serious neurological disorder could extremely tense the body and release many stress chemicals like cortisol etc. that could also strain the muscles and therefore increase symptoms like fasciculation and cramps. In my own experience I often feel “pre-cramp” sensations in my calves when I am overly stressed and focused on ALS concerns. It usually disappear when I stop being fixated on my body.

Regarding what you said about thigh twitching, well 4 months ago (it was also 1 month after the onset of my twitching) I was starting to feel better, and thought the whole twitching story was all behind me. I was lying in my bed thinking that it has been a few days that I was barely noticing any twitch. Well, just 5 minutes later, started the worst twitching I ever had till today and it was located in my left thigh. It lasted 15 hours then disappeared completely and never came back. It freaked me out because it was in my left thigh which has clear and very visible signs of atrophy and dents due to an ACL reconstruction surgery a few years ago. At that moment I was sure I had ALS, went back to the neuro in a state of terror LOL. He was patient enough to re-explain that it was not ALS. So yes I believe the mind can create things from nowhere.
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Re: Twitching and what not [my story]

Postby TheCBkid on April 4th, 2014, 12:45 pm

I appreciate all your responses.

My response to you guys about noticing twitches is that it's very different for eveRyone. As an athlete, and kid who has struggled with weight at times, I'm VERY aware of everything that goes on in my body. So when I was twitching in high school, never thought much of it. Especially since I have things like facial ticks (excessive blinking, nose flaring, etc. A form of Tourette syndrome that was supposedly caused by a dosage o adderall that was too high)
so I don't think it's a coincidence that this all started after a documentary. Mind you, I already knew about ALS, this is just the first time it's been brought to the forefront of my mind since my HA started. So the mind is a VERY powerful thing.

Apologiea for typos and punctuation, typing from my cell phone.
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Re: Twitching and what not [my story]

Postby TheCBkid on April 4th, 2014, 1:15 pm

So my clinical didn't show signs of weakness or atrophy. The NP pushed against my legs and said I had fine muscle strengtg. She checked my legs for atrophy and what not I guess by feeling on them. The one problem I had is that when she was checking my reflexes she didn't get one out of my right leg for a while. But she said she doesn't think much of it because it happens a lot. When she did get one my leg kicked a lot higher. I'm not exactly freaking out. I feel like my symptoms arent *** indicative, and the fact that I'm 20 is working in my favor. Just wanted you guys opinions
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Re: Twitching and what not [my story]

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