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To Arron

Postby Pole on June 23rd, 2003, 6:46 am

Hi Arron
I wonder if you are still sure (after reading Carol's story) that isolated fasciculations + clean neuro exam + clean EMG ruled out ALS? Fisrt signs of weakness and diagnosed after 9 months of fasciculation! Now I am really scared - I have been twiching for 3 months.

I don't know what to think. Untill morning I was really calm and sure that I have BFS and now my fears come back.

There is one thing that I can understand in Carol"s story. Her fasciculations started in legs, but she does not mention about any weakness in legs. She told that her throat and breathe muscles are affected. If it is truth that is bulbar onset I think. So why first fascics in calves?
Do you know if Carol had wildspread fasciculations or only one or two spots?


Carol, if you read this, you should still have a hope that it is not ALS. Have you get another EMG or it is just an opinion of next neuro you had visited???
God Bless You.
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Postby tlotoxl on June 23rd, 2003, 10:32 am

Pole - I don't now the details of Carol's case, and I'm also hoping that her current diagnosis is incorrect, but you know that with so many people suffering from BFS it is inevitable that eventually someone will suffer first from BFS and then ALS. Because they both appear to be neuromuscular in original, this person might therefore assume that their BFS somehow led to the ALS when in fact it was just a very unfortunate coincidence that the person happened to suffer from one and then the other.
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Postby Arron on June 23rd, 2003, 3:21 pm

Pole, yes of course I still believe (which is fact) that BFS does not, and can not lead to ALS.

If Carol had come down with Cancer, would you believe that BFS causes Cancer too?

What Carol had from the start was ALS. Maybe her first doctors misread the EMG or didn't do a good job because they needed to make their T-time at the golf course in an hour and were in a hurry... I don't really know...

There are LOTS of diseases that go misdiagnosed at first because the first doctors botched something up. You have to trust your doctors, yes. But doctors do make mistakes, (some honest mistakes and other's because of neglect or stupidity) whether it is just a simple mistake or the tests had borderlined results or they were negligent... I'm not saying her doctors were negligent in any way though... I just know what "usually" happens. Maybe her doctors simply didn't get a good enough test to be able to see the actual results. There could be any number of reasons why... and they might have been fine doctors, it's hard to say without actually knowing some of those details.

Now, for those of you that are reading this thinking, "gee, what if MY doctor misdiagniosed ME and I have ALS". PLEASE don't think like that!
Carol's case is a VERY rare case and ALS itself is VERY rare. BFS on the other hand is obviously much more common than ALS and time is certainly on your side. There are also some pretty big differences between ALS twitches and BFS twitches in the way they present themselves and the way they move around your body. Doctors know this and that is one of the things they look for, among many other things.

ANYONE can come down with ALS at anytime! That is a fact. It can happen at any age, in men and women and affect just about any area of the body as a starting point. With that, you have to look at statistics, such as "average age groups". It is usually in older age groups and in people with leaner muscle fibers. There are only about 5,000 new cases a year. Geeze, there are that many people that die in car crashes a day in the world, are any of you scared to drive your car?

We've been over this stuff many, many times before. Carol's case was simply misdiagnosed from the start. If you have had one or two clean EMG's and/or you have been twitching for a few months with no atrophy or weakness, then it is pretty apparent that you do not have ALS. That's a gimme.
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