Stop Extreme Anecdotal Claims on ALS

[owingDuckWhistler777]

Stop this, it's complete nonsense! You cannot take extreme anecdotal examples and extrapolate them to everyone else.

There is excellent evidence that people with bfs do not develop als (Mayo clinic study). Sure, the very occasional emg may not pick up als in the early stages - no medical test is 100% accurate. HIV tests do not always pick up the infection. Chest X-rays do not always diagnose lung cancer. CT scans do not always pick up brain tumours. Meanwhile, back in the real world:

1. Twitch-only als accounts for only 6.7% of als. These people will normally have a dirty emg. If the emg is wrong, they will develop weakness, atrophy and reflex changes within a short time anyway (e.g. in Carol's case).

2. Confirmed bfs does not turn into als.

3. als charities despair of Stephen Hawking's als - he is the person everyone thinks of when they hear about als and he has such a rare form of it.



People need to get used to comparing big risks with little risks. You might get hit by an asteroid, but do you smoke? You might get struck by lightning, but does your home have a working smoke alarm?

Life is a risk. Don't spoil yours by taking such a distorted view of the world. And FWIW could people hold back from posting alarming unsubstantiated theories if they have absolutely no basis in fact?


There, I feel better already!

David

 

[miguelwo69]

i agree with david..dwl. stop trying to reach for things and just trust the experts asl is not bfs...by the way the 6.7 in canada did not have emgs done at twitching onset.

scott

 

[TheTrex]

Come on people get a grip!! 30 years of twitching becoming ALS?? The fact that the lady's EMG became abnormal after decades of twitching likely indicates that she developed ALS co-incident to not because of her BFS.
I think we need to avoid anecdotal stories and wild speculations and stick to veriable scientific information.
People come here for reassurance not to further amplify their fears.
Sure ALS is a very scary thought; and it drives everyones anxiety, whether they had problems with anxiety prior to twitching or not. It is important though for us not to succumb to our thoughts running wild.
BFS is a real diagnosis that was created to characterize people who twitch without signs of NMD. If doctors felt that BFS was simply ALS that had not manifested itself yet, their would be no diagnosis of BFS. There are diseases that sometimes take years before they can be diagnosed (such as lupus, certain psychiatric diseases and even some types of leukemia) but that doesn't cause the medical community to give patients an alternate diagnosis until their disease declares itself.

What we know about BFS hasn't changed. Twitching without weakness and a clean EMG and Neuro exam is BFS 99.99% of the time. Is there ever an exception, probably, but it is even remotely likely...no! Your time would be better spent living today rather than worring about tomorow, for as the saying goes tomorrow may never come.