On the lighter side...

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On the lighter side...

Postby Itwitch on October 31st, 2003, 9:58 am

Folks,

Let me start off by saying “thanks!”. Thanks for helping me get my sanity back. I’m going to try to keep this on the lighter side…because I think we all could benefit from it. Having read hundreds of posts about BFS I (almost) believe I don’t have ALS. I’ve been suffering for a while…more on that later. I’m also a reasonably successful stand up comic. Think of the comedic potential of BFS. But to date, I’ve steered clear of it. Well, I’ll at least include some humor amongst my own personal observations below.

I really can’t remember when my fasciculations started. And I never thought I’d be able to spell “fasciculations”. I’m still not sure I know how to pronounce it. But from here on out, driven by laziness, I’m going to call them fascics. I know I’ve been having them for a couple of years. I never really paid much attention to them until I decided (not unlike the rest of you) to do a Yahoo search on “muscle twitches”. Well, that was pretty much the end of sanity and the beginning of “living will” planning for me. As you all know, the Internet would pretty much lead you to believe “if you have widespread twitching…you pretty much have ALS”. And it sure doesn’t go much beyond that unless you have the courage and stamina to dig deeper. Only then will you discover the other anomalies that cause fascics: blood imbalances, elevated liver enzymes, nutritional deficits, stress, BFS, etc. But before you get to that level of peace, you read the horrors of ALS. And my heart does go out to anyone who actually has it.

But it’s Halloween and this is supposed to be a fun day…so I’m not going to dwell on the darker side. Since I stumbled across the ALS sites, I’ve noticed that nearly every muscle in my body twitches…nothing is spared. And I’ve done all of the obvious things: pounded Magnesium until my stools turned gray (the scientific measurement that I’d had enough), gave up caffeine (and then started drinking it again), gave up beer (and then started drinking it again), tried not to think about it (yeah, that’s going to happen) and convinced myself that since I can still turn a key, stand up without using my arms, walk on my toes, walk on my heels, bench press hundreds of pounds, I must be okay.

And I’ve read the posts. We’re all very good at diagnosing each other as being completely fine. But deep down inside, we worry about ourselves: hmmm my calf looks strange…never noticed that indentation before. My forearm has a dent in it, no, wait, that’s spaghetti sauce. The gas pedal feels more difficult to push down today. The toothpaste squeeze cramped my forearm this morning. We all do it. Standing nude in front of the mirror (come on, you do it) and looking at one quadricep versus the other, one calf versus the other. I’ll even do the double mirror thing to see if one glute is the same size as the other. Thank God, my butt is symmetrical. It’s frightening. And why? because we stumbled across the most horrific explanation for twitching. Now I have no weakness, no atrophy, some brain fog, and horrendous twitching.




Have I had an EMG? No. And I don’t intend to. And I’ll tell you why. I’m surprised so many with twitches have gone to the GP and ultimately the neuro after reading posts from these sights. If it is ALS, there is nothing they can do for you anyway. And when you start dropping things, slurring, tripping, etc., I guess that’s reason to believe you’ve been struck. In the meantime, I’ll just keep twitching away. And I know myself well enough to realize that even if I got a clean bill of health, I’d still worry, and I’d still twitch.

I’m a hypochondriac from way back. I used to self-diagnose with a God-awful medical dictionary from the 70’s when I was a child. Had a rubbery lymph node, diagnosed Hodgkin’s disease. Had an itch that wouldn’t go away, diagnosed Grave’s disease. I was quite the doctor. I was always amazed by how I could go on living with so many devastating diseases. From there, I escalated my practice to the school library, followed by college libraries. I was seriously obsessed with my health. And this psychosis has only gotten worse with the advent of the medical information superhighway. Now, diagnoses are only a click away. I dread the day I did the Yahoo search for “twitches”. Now I’m an expert on the difference between “cramp”, “twitch”, “fasciculation” and “tremor”. I feel like I could diagnose BFS or ALS with the best of the neuros…definitely with the best of the GP’s.

I do have a personal theory regarding BFS. In addition to noticing the fireworks going off in my body, I’ve noticed something else. I’ve noticed a hypersensitivity to other vibration-causing elements if they somehow directly or indirectly touched me. I’ve noticed the fan running in my notebook computer bothers me (through my forearms) at times. If I’m leaning up against the kitchen counter I can tell if the dishwasher is running. I’m convinced the when you’re dwelling on fascics, your nervous system is cranked up to the max and you’re going to notice EVERY vibration X 10, whether it’s coming from inside your body or not. Now I have a horrible (and selective) memory, so I can’t really be sure if I’ve always had fascics or not. But I’m guessing that to a certain degree I always have. But now my mind is on constant watch for them. I have never had any that have awakened me from a sound sleep. And I don’t tend to notice them when I’m having fun. But when I’m surfing the web for ALS information, wondering if my typing skills are waning, my body is in a full-blown twitching symphony. Even a small muscle above my left ear flutters uncontrollably.

At the end of the day, I take comfort in the numbers. Realizing how rare ALS really is, and seeing how many people post concerns about BFS (also guessing that for every 1 who posts, there are likely a dozen who only read) I am convinced that it’s probably BFS. And since I’m quite sure I’ve been having them for several years, in the absence of atrophy or weakness, I’m giving myself the diagnosis of BFS. Does that mean I’m going to stop doing the reverse-mirror butt check? Probably not. Does that mean that I’m going to stop doing ad-hoc strength tests here and there? Probably not. But I am going to try to get on with my life and try to ignore the twitching. To my fellow twitchers: Happy Halloween and thanks for helping me to look at this objectively.


:D
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Postby Jenn311 on October 31st, 2003, 11:01 am

Hey It Witch...

Great post! High five to a fellow childhood hypochondriac. Glad you've found us....Happy Halloween to you as well.

Cheers (and Peace, love and happiness....)
Jen :D
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Postby John on October 31st, 2003, 7:04 pm

Great post ,allthough I am much funnier than you are . I CHALLENGE YOU TO A COMEDY DUEL.
I won my last duel ,it was not a comedy duel ,but I am undefeated. It was your good old fashahioned manly duel.I being the one challenged chose the place ,and weapon.Concrete filled shoes in 5 foot of water .I being 6'2''and she being (yes it was a woman ,I show no mercy when it comes to dueling) 5'0'' I won hands down.

I await your answer,ON GUARD.

John
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Postby twitching man on November 1st, 2003, 3:48 pm

great post! i think I was reading in a mirror, I don't know if that makes since or not. Anyways thanks for the post.
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The Duel is On!

Postby Itwitch on November 3rd, 2003, 1:50 pm

Ah yes, the comedy duel. Okay, you’re on. But since I’ve been challenged, I’ll decide the venue. And since this is a BFS site, I say the comedic crossfire has to have a basis in BFS…to keep it “real”. Okay, you want comedy? You’ve got it. I’ve always had a preference for real-world humor…a la Seinfeld. Because nearly everyone can relate to it AND we all tend to do a lot of the same things. Let’s let our audience decide who wins the comedy duel. This will be my submission, and you reply with yours. Then we’ll ask the readers to decide who is funnier…realizing, mind you, that you challenged me. At my command, unleash comedic hell…GO!

I think it’s a shame that the one place any normal guy would want a fascic, we don’t get them. Realizing that it isn’t a muscle, per se, contrary to slang on the streets, it is still ironic that in the one area it might be interesting to “suffer” from a fascic, a fascic will never be found. If I did get one there, however, I don’t think the neuro would want to hear about it.

I find myself doing squats when nobody is around, walking on my tip toes in my office, being sure to not be seen by passers by…not unlike the unwary driver who assumes nose-picking is a safe sport while protected by a vehicle…with windows all around! I walk to my printer, I even throw in the “left foot tip toe, right foot heel, left foot heel, right foot tip toe”…I am clever AND without weakness. As I grab my report from my printer I scan my forearm and “intrinsic hand muscles”…everything looks fine…no indentations today…sweet. My thumb and index finger pinch the report with the greatest of ease…I feel pride in that. Opposable thumbs in an absence of atrophy or weakness are never indications of ALS…I think I read that somewhere.

I find myself swallowing constantly to determine if any “bulbar” symptoms have developed since the last time I measured my own ability to swallow. The only thing I’ve concluded is that it really is difficult to swallow when you have almost no saliva in your mouth. Better do an Internet search for “reduced salivation and ALS”….scarily, that would probably get some hits. And I’d be drawn back to the photograph of the poor soul with severely atrophied forearms. I still can’t get that image cleared from my mind. But that is the yardstick to which I measure my own forearms.

Like any red-blooded hypochondriac, I weigh myself with a “Physicians Balance Beam Scale” every day…the theory being muscle weighs more than fat and if I’m not losing weight, I’m not losing muscle…I gained a pound over the weekend!…sweet!

Into the shower I go…I drop the soap…good God! Was that weakness? No…turns out the bar of soap is just really slippery when wet. I pick the soap up. As I attempt to replace it in the soap dish the bar once again leaps from my hand. I go to grab it…quadriceps gives out…attempt to catch myself but slip on the soap spill from the previous bar dropping. I catch myself but only after smacking my knee into the faucet. My leg is now shaking. So is the muscle behind my left ear. I ultimately dry off after almost slipping on the wet tile floor.

I dress myself. The top button is causing me great difficulty. But I am not rattled because of the buzzing of my kneecap. I look down at it…thank God!...it’s bruised. That has to be the reason for the buzzing.

Off to my car. Open the door handle…buzzing, no weakness…handle didn’t slip out of my hand either. Crank the ignition…nice…no weakness noted there. Apply brake and put vehicle into D…uh oh…right leg feels a little numb. Note to self…while at work do an Internet search for “Weak Right Leg While Driving AND ALS”. Oops…felt a fascic in the lower abdominal area…nope…thank God…it’s just gas.

Uh oh…twitch in left eye has developed. Man in front of me is looking in rearview mirror and thinks I’m winking at him. Time to throw the visor down. While doing so left hand felt weak…couldn’t get the visor unsnapped…oh yeah, that’s because it sticks…it always has.

The radio is blaring…but I’m not paying attention. I just realized I had a fascic in my left pectoralis major…interesting. I’m driving but also not really paying attention to what I’m doing. I’m too busy trying to figure out if my leg is buzzing still or not. I’m worried…my knee is really sore…oh yeah…smashed it earlier. Thank God!

I arrive at work. I’m ready to begin another day. Another day of worrying, strength testing, and the never ending search for “which muscle is twitching now?”. I pop another Magnesium pill, and pour myself a decaf. Just another day in a twitcher’s life.

Okay, dueler…your turn.
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You are a great comic!!!!!

Postby scaredtom on November 3rd, 2003, 4:53 pm

I'm at work and could scarcely contain myself. This is a REAL ROFL posting!!! Man - can we all relate to some extent!!! It's been a while since I had a total real belly laugh!!!!

I want to read more posts like this!!
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Postby sarahtonin on November 7th, 2003, 5:38 am

I am waiting with bated breath for John's reply :D
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My story

Postby Flash19 on November 13th, 2003, 1:51 pm

The other morning I got up out of bed and noticed that my left thigh had an unusual tremor. The tremor felt like the muscle was weaker than normal. Obviously the muscle had died. I now know that strongly twitching muscles are not indicative of ALS and given that I have ALS it's little wonder than my twitching has become markedly weaker.

I decided it was time to do the ultimate serious of verification tests. EMG's are unreliable so I have developed a more definate system:

Please not it is necessary to be naked and standing side on to a mirror.

1) Look at right calf muscle. This one is much smaller than the left one. Test passed.

At this point my wife seeing what's about to take place gets up, dresses and leaves the bedroom. Cool - the coast is clear for...

2) The dying swan. I stand up straight take my left foot off the floor and raise my left leg at the knee. Then I press myself up onto tiptoe on my right foot, windmilling my arms to keep balanced. The right calf is obviously weaker and it hurts the way ALS always feels like I've pulled the muscle. I bounce up and down a but. Yup definately weaker. I feel my bowels start to let go - step 3 and final vindication is just around the corner. Obviously if my bowels are so weak that I suddenly have to run to the bathroom before I *beep* myself then IT MUST BE ALS.

A shadow crosses me. Then I hear knocking at the front foor. The bedroom window looks out onto the front doorstep. I get an uneasy feeling. My bowels tighten and suddenly the desire to *beep* goes away to be replaced with an overwhelming cringe. It's not dark enough in here! That means... Oh *beep*!

I come down from the dying swan position. Slowly I turn round and look at the window. The parcel delivery guy is staring back at me. The worst thing is that I am very hairy, like a yeti, and - for a grown man - I am endowed with a very small p***s. Yeti , hung like a housefly, and apparently practising very bad ballet in the nude.

My wife is rolling around in hysterical laughter on the hallway floor. The parcel delivery guy is bright red and trying his best not to make eye contact with me, but losing the battle to contain his laughter.

Realising that it's too late to dive under the bed, I take the only course of action left to me. I pick my *beep*, scratch my nuts, belch, and walk upstairs to the toilet.

This ALS lark is sooo embaressing.


Flash
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BTW

Postby Flash19 on November 13th, 2003, 1:54 pm

The type of ALS I have is fast hypochondria onset. It's virtually impossible for a neuro to diagnose, takes decades to kill you, and sufferers usually die of the side effects such as natural causes, alcoholism, and car wrecks.
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Postby Jenn311 on November 13th, 2003, 2:32 pm

OMG Flash....

Thanks for that laugh. I think you win. Sorry to hear your twitching is back....but glad to hear from you all the same.

Cheers. Jen :wink:
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Postby sarahtonin on November 14th, 2003, 4:18 am

Tell me about it - sitting here at my desk laughing to myself and staring at my twitching foot, what must they think - please don't post such funny things in future, it is bad for my reputation :lol:

Sarah
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laughing at ourselves

Postby scaredtom on November 14th, 2003, 8:25 am

I agree...this is dangerous stuff to read at work...I need to stay composed. It is so hilarious!! So good to laugh at ourselves! Why is it funny??!! Because we can all relate to our own absurdities!!! How do I REALLY check muscle strength? By "crunching" when I do my cycling. I have a road bike and cycle for exercise and I'll do sprints to see if I can still knock 'em dead. All I want to know is.....what can I/we do to stop the d*mn fasciculations???!!

Tom
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laughing at ourselves

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