Arron! A couple of things..

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Arron! A couple of things..

Postby TattooedMommy on May 29th, 2008, 9:17 pm

Hey just read one of your post and wanted to ask clarifications of a couple of things then ask a couple of things please.
I understand what you are saying but I found one thing that has sent people into "cherry picking" one word- and getting scared....
So ....

1.) You stated that most of us dont have true fasics..however there have been a lot to have fasics show up on a EMG! I had ONE myself throughout my whole left side of my body that was tested - I think something like 14 muscles. Anyhow- I would have cherry picked that statement myself and you DID SAY that it certainly doesnt mean you have ALS BUT I know it can make someone thing "OMG, I did have a fasic on my EMG" (such as myself) . It just wasn't with the Positive Sharp waves, denervation, and Fibs and Mups....
So I thought MAYBE we might can clear that up!

2.) Time is on your side- However with a EMG I would think that is your answer. You dont need another and another and another and another following months if you are already fasciculating in EVERY LIMB or perhaps just ONE LIMB! I am not undermining you at all, I am just asking questions and clarifications that I would want if I was new reading this. Your right when you say its SOOOOOO hard to explain things on here and you have to watch what you say!

3.) BULBAR has been a HUGE ISSUE lately. Seems when people get a CLEAN EMG and the DIAGNOSIS of BFS from their NEURO weeks to follow they get to the BULBAR cycle. I myself almost went down that route but luckily enough my neuro and some posts I had read on here already shot down those fears.

Again, I am NOT undermining you AT ALL- I just saw a few things in your thread that might need clarity. Thanks again for your time, I'd be in a straight jacket w/ out you!!

DeeDee
"I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed".
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Re: Arron! A couple of things..

Postby Arron on May 30th, 2008, 12:12 am

OK, let me try to clarify these for you and everyone in a more precise way.

1) Yeah, I said "most people do not have true fasciculations". That does not mean NO ONE has them! There are THOUSANDS and THOUSANDS of people on this site. "Most" can be 51%. That kind of leaves THOUSANDS and THOUSANDS of other's that DO have true fasciculations, right? I didn't say 99.99999999% do not have true fasciculations. if a LOT of pepel have them show up on their EMG's, then there are more that won't.

You create panic by picking at every single word. Not "you" personally Dee Dee, but "you" as a general word covering all readers that discent every word to its exact and literal meaning. I try to do my best to head that off, but I can't do it 100% of the time.

here's the deal.... most of the time BFS twitches are NOT true fasciculations. You WILL have true fasciculations from time to time. Some people more than others. ALL of the big thumps, bumps, limb movers, etc. are NOT true fasciculations. Some of the little ripples and fine "buzzing" fascics "can" be true fasciculations though. Everyone is different! Some people will have more true fasciculations than other people. We are not all the same!

Most people, when they get their EMG and are twitching during the EMG do not have their twitches show up. This is because those twitches were NOT true fasciculations.

Here is the BIG question.... so what if you DO have true fasciculations and they DO show up on the EMG?? OMG!!! :shock: Well..... Isn't the doctor standing right there watching the EMG??? Doesn't he know what he is looking for? Don't NORMAL people get occasional true fasciculations every so often, especially around their eyes or fingers? The answer to all of those is YES!

So what if you had true fasciculations during your EMG?? If it was a bad EMG, then it was a bad EMG and the doctor would have said you had an abnormal EMG. If it was a clean EMG, ESPECIALLY when you had twitches showing up DURING that EMG, it is as proof positive you do NOT have anything like ALS going on as you can possibly get BECAUSE they can't say they couldn't find anything! They saw NORMAL functioning fasciculations which fire for different reasons and show up differently than abnormal one's.

2) You lost me on that question. Time is on your sidwe with BFS because if it was ALS, bad things would begin to happen with no turning back. With an EMG time is not a factor. If you are already twitching and you get an EMG ANYWHERE on your body, all you need is ONE EMG. You do not need to keep going back over and over again. The main reason doctors say to come back in 6 months for a follow-up EMG is to cover their [email protected] and to help reassue you that you are OK.

Trust me, if you had ALS you won't have a clean EMG, and you won't be OK in 6 months. You wouldn;t NED a second follow up because in 6 months, any and all questions pertaining to whether you had ALS would be answered without the need of an EMG because seriously bad things would be happening by that time.

3) 99.9% of all bulbar symptroms are anxiety related. If you had a clean EMG you do NOT have ALS. Do you have any idea how powerful anxiety is and what it can do to your body? It can literally melt your knees out from under you. It can cause you to shake so badly, you can't control your hands or do anything with yur hands and limbs. It affects your breathing. It affects your muscles. It affects your unconcious motor functions. It can cause you to pee your pants. It can cause you to have instant dirrhea. It can cause you to lose the ability to swallow or speak. It can cause you to choke.

If you ever have the misfortune of having a thug point a gun at your head and tell you he is going to kill you, ALL of those symptoms, and then some will happen within seconds, and rightfully so.

When you are on the freeway and you have a near miss, which could have been a deadly crash, your knees melt and you shake all over. BOTH of those situations sound extreme but they are life threatening situations. Having the feeling that you have a really bad, fatal disease is EVERY BIT as scary as both of those, so doesn't it make sense that any and all of those symptoms could (and do) happen over concerns of having ALS? The answer is yes. So difficulties swallowing after weeks of being tensed up and anxious about dying a horrible death is a VERY common BFS symptom, which is exactly why you answered your own question when you said:

"BULBAR has been a HUGE ISSUE lately. Seems when people get a CLEAN EMG and the DIAGNOSIS of BFS from their NEURO weeks to follow they get to the BULBAR cycle. I myself almost went down that route but luckily enough my neuro and some posts I had read on here already shot down those fears."

This is because EVERYONE is experiencing similar fears, (including yourself), and EVERYONE's body reacts in similar (yet still different) ways.
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Re: Arron! A couple of things..

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