ALS vs. BFS: Whats the Difference?

garymills

Well-known member
Howdy, while I am sure the post was well intended, I believe that the way the information was presented may have been a bit confusing and could be easily misconstrued by those new to the forum. The best information on this forum is that which is posted in "BFS In A Nutshell".

They key with ALS vs. BFS, as many others have noted on this site, is the "company" that the twitches keep. Many of us have twitched, cramped, buzzed, vibrated, in ways that could be similar to the way someone did with ALS. However, the absence of clinical weakness, and the presence of a clean EMG and/or a clean neuro exam are what differentiate us from an ALS patient. I may be over simplifying here, but our twitches tend to not keep "bad company", i.e. clinical weakness, EMG's presumptive of a MND, severe hypereflexia, positive Babinski's, severely high CK lab results, slurred speech that never gets better, etc.

While your post was intended to be positive, it would probably be better to have new readers view the "BFS In A Nutshell". People often find this site after having read the ALS posting forums precisely because those sites give an impression that one might have ALS based upon their symptoms.

Also, the example of the man who twitched for two years was likely disconcerting because many of us started twitching in the calves and it progressed rapidly to the entire body. Would this man have had an EMG or neuro exam when his twitching started, they would have likely found him presumptive for ALS. He didn't just twitch for two years and then suddenly come down with ALS. He had ALS for two years but just never got medical attention to confirm it.

Thanks.
 
Had,

I don't delete threads often, but what you consider valuable information may not be to others here. The very fact that you claim to have spoken with 4 als sufferers who twitched PRIOR to other sxs goes against basic als principals and will cause worry on this site. If you had well intentioned purposes that's great, but this site is not an als board. If you want to talk with als patients, you have the right to do so. But other members of this board come to this site to get away from all the als buzz associated with fascics. Please respect how others might react to what you post....even if your intentions are good.

Take care,

Gary
 
Garym: You probably didnt read my post - it really was valuable because they explain to me that they DIDNT ONLY TWITCH and they dont know anyone who got ALS and only twitch before. Im sure there were nothing that could bring worries, all information were positive!

BFS in nutshell is good, but its not true enough (i.e with ALS you can twitch on whole body, but before this you have to pass through different stage - for example that confirmed me all of them).

I talk to them personally, it was random meeting due to my "job" and they were very kind to me. My anxiety is almost completely gone because I know my syptoms are absolutely different than their and I saw their twitching...

But well, I think you really didnt read it and only judge the title - but Im sure sometimes it could help more then BFS in nutshell, because its real.
 

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