TO ARRON

Post your questions about BFS here

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Postby Arron on September 24th, 2002, 12:44 am

"i read what arron wrote about the difference between BFS twitches and ALS. Is it true that you usually don't see ALS twitches? My neuro told me when I got checked last week that if I had ALS he would see twitches all over. I hope you are right Arron. Please advise and thanks for everyone's feedback"

Well, sstine, not all doctors are up on ALS and most doctors have never even seen a case where a person had ALS. It is VERY rare, only about 30,000 cases reported so divide that by the number of doctors out there and the chances of YOUR doctor ever even seeing a patient with ALS is about as slim as winning the lottery. I must have 3,000 doctors in my phone book alone in my little area, so you can imagine the number nation wide. I'm not saying your doctor is a quack but saying he would see fasciculations all over is about as lame as saying twitches lead to ALS. That is just untrue and total misinformation.

Here's the deal with twitches in BFS against ALS. It's not a matter of being able to see the twitches or not. Yes, most people never even noticed the twitches in ALS until they noticed weakness first. Remember, ALS twitches are SECONDARY to the underlying disease, NOT the other way around. ALS twitches are usually very fine. So fine infact, that sometimes they can only be seen under a special strobe light in a neuro's office. That's a far cry different than BFS thumps and bumps, right? The deal is that ALS twitches (among many other things) are very fine and are NOT widespread at any given time. They do NOT thump one second and go the next, and do not appear in one place one minute and somewhere else another minute. ALS twitches are caused by dying muscles and nerve endings in the area affected by the ALS at that given time. ALS does NOT take-over your whole body at once in random locations. It starts in a hand, an ankle, a foot, the throat or where ever it decides to start and progresses or "spreads" from that point-on. It MIGRATES. It does NOT bump a muscle in your butt cheek, then your shoulder blade, then your finger, then your calf and then someplace else. That is NOT migrating twitches, that is RANDOM twitches, pops and thumps, NOT TRUE fasciculations of the ALS type.

As I said earlier in this thread, "among many other things", meaning there is a HUGE difference between ALS twitches and the way they present themselves compared to BFS twitches and so far, NONE, as in, not one single one of you, nada, zilch, no way, no how have ANY of you posters on this board or any other board EVER described anything even remotely like what ALS twitches are like and that is why not a single one of you... that number again is ZILCH of YOU have had ANY ALS diagnosis' from your doctors. Gee, do you think maybe they know the difference between ALS twitches and BFS twitches too? Hello??????? That is why they aren't scared but you still are. If you weren't scared, you wouldn't be here reading this, right? Honestly, have you see anybody on this board or any other board get diagnosed with ALS yet? NO. Not when they describe the kind of symptoms of BFS withOUT weakness or migrating symptoms.

I have seen only ONE, that is 1 single person present their symptoms on a board like this one and end-up actually having ALS. That is one person out of thousands that didn't, and this person said she had weakness and it was difficult to make her hand function to hold her toothbrush or her coffee cup. RED FLAG folks! That is REAL weakness and it was centralized in ONE place. NOT random twitches all over. It was slowly working it's way up her arm before she even noticed the twitches. THAT my friends, is how ALS presents itself, NOT with all of this "buzzing", "rumbling", "thumping", twitching, tremoring, shaking, aching and so on symptoms you and I have.
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Postby Debbs on September 24th, 2002, 1:24 am

Excellent Post Arron, Your coming in loud and clear !

Have a good one
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twitching

Postby j1 on September 24th, 2002, 6:36 pm

Arron,
I agree with your post...however if that is the case, I am scared. The twitching in my hand is diffn. than the twithcing in my calves that have been present for the past 5 months. The hand twithcing is on the palm side below the pinky and above the wrist. It is fairly constant and can be felt. I also what I would describe as a light buzzing feeling in this hand. I do not have loss of strength, but I keep waiting for this. I had a clean EMG and neuro exam 4 months ago, but this has since started. What scares me is that I would describe this twitching as fine and localized. I get the random twitches all over..a bump here or there, but this area/ my calves and arches of my feet are constant. I can still do everything - go to the gym, play basketball, surf, etc.. but the fear is great. Can BFS have fine constant twithces too
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Postby Arron on September 24th, 2002, 7:18 pm

j1, slow down dude... BFS twitches come in ALL shapes and sizes, from constant buzzing to occasional thumps & bumps to slow, rolling muscle flexes to little fine twitches, to ripples to you name it. BFS twitches can come and go in one part of your body yet be constant in other parts and that is VERY common with BFS. We call these constant twitching areas "hot spots" and they are VERY common and can last for weeks and even months in the same spot. That is why your hand twitches constantly and lightly yet the rest of your body has the hit and run twitches. So you have a hot spot in your hand... no big deal, I have had that too and in MANY other places for weeks and even months at a time. That is normal BFS, not ALS. If ONLY your hand was doing what you described AND... hence the "and" here, AND you had weakness or loss of hand control, I would be worried. You do not, so go play ball, drink a beer and hang-out with the guy's and take your mind off of this crap. You do not have ALS symptoms PLUS you have had a clean EMG. A clean EMG ALWAYS means NO ALS, period, end of story, so get off this web site, go relax and live life.. you my friend are wasting your time here. You are fine and have BFS, that's why you had a clean EMG and your doctor sent you home. :-)
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Much appreciated

Postby j1 on September 24th, 2002, 10:24 pm

Arron,

You are a good person...not many people take the time to reassure others like you do. I hope at a point very soon..I wil be able to give back to others as you have done. Thanks for helping my mind be at ease. You have done it before and once again here. I will try not to focus on this! Thanks!

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Much appreciated

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