Page 10 of 13

Re: BFS Survey

PostPosted: August 23rd, 2013, 12:55 pm
by pbohan
405 participants and the general statistic file has been updated on my website. Keep the surveys coming!

Re: BFS Survey

PostPosted: August 23rd, 2013, 9:25 pm
by angelo212
I just took the survey. It is a bit flawed in the question area. For many of the questions it says enter 1 if you never tried this then after that it says enter 1 if you tried it but it never worked. It has that for numerous questions.

Re: BFS Survey

PostPosted: September 4th, 2013, 1:29 pm
by pbohan
Angelo,

Enter -1 is (minus) 1 as opposed to Enter 1 for a (plus) 1.

Re: BFS Survey

PostPosted: September 22nd, 2013, 11:44 am
by pbohan
We now have 417 participants in the survey. I have not updated the general statistics yet and I have not quit trying to find someone interested in publishing the data. To date, no luck, but it does not hurt to try.

Re: BFS Survey

PostPosted: September 28th, 2013, 11:19 am
by pbohan
419 Participants and the general statistics have been updated and are available on my website. Thank You.

Re: BFS Survey

PostPosted: October 23rd, 2013, 9:44 am
by pbohan
We now have 432 participants in the survey (including outliers). The general statistics have been updated and posted on my web site. Thank You.

Re: BFS Survey

PostPosted: November 12th, 2013, 5:21 pm
by pbohan
We now have 443 participants and the general statistics file has been updated and loaded on my website.

Re: BFS Survey

PostPosted: December 2nd, 2013, 2:28 pm
by pbohan
We now have 455 participants and the latest statistic file (excel spreadsheet) has been uploaded to my website.

Re: BFS Survey

PostPosted: December 18th, 2013, 4:31 pm
by pbohan
We now have 463 participants and the data has been updated and loaded to my we site. Have a Happy Holiday season everyone!

Re: BFS Survey

PostPosted: December 18th, 2013, 5:51 pm
by veryworried123
Can someone provide me with some more information on the 4 people that developed als after twiching and cramping? its sited on page #17 but what's the backround on that

did they just have twiches and then it developed into als?

also does anyone know how many people from bfs suffer from any permanent disability such as pain and paratesia?
thanks

Re: BFS Survey

PostPosted: January 5th, 2014, 7:02 pm
by pbohan
Technically, BFS sufferers should only have twitches and no other symptoms. If you have other symptoms than the disorder is probably cramp fasciculation syndrome (CFS) or Issac's syndrome. I was originally diagnosed with BFS and my new neurologist said I have something between CFS and Issac's.

As for the paper, I would not put too much credence into this study. Like most medical papers they are statistically flawed. The patients in the study had multiple symptoms meaning they did not technically have BFS. That being said, BFS, CFS, Issac's syndrome, and people with no neurological conditions have the same chance developing ALS - about 1 in 10,000 - 20,000 people (Very low). Having a neurological condition or syndrome does not make you any more likely to get ALS than seemingly healthy people. There is no study to conclusively say otherwise.

Think about it; If BFS patients were more likely to get ALS than there would be more people / doctors studying the disorder. The fact no one cares about BFS and no is studying it should tell you something - the disorder has no impact on ALS.

Re: BFS Survey

PostPosted: January 7th, 2014, 12:38 pm
by pbohan
We now have 475 participants and the general statistics file has been updated and loaded to my website.

Re: BFS Survey

PostPosted: January 19th, 2014, 1:36 pm
by pbohan
We now have 484 participants and the data has been uploaded to my website.

Re: BFS Survey

PostPosted: February 1st, 2014, 4:23 pm
by pbohan
We now have 491 Participants and the general statistics file has been updated and loaded to my website.

Re: BFS Survey

PostPosted: February 7th, 2014, 4:41 pm
by pbohan
We now have 498 participants in the survey. The excel file with the general statistics has been uploaded to my website.

It looks like we should pass the 500 participant level soon. I am planning on reevaluating the data for correlation, statistical significance, and trends again - Probably the end of April when my schedule calms down a bit.