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Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: December 30th, 2012, 4:05 pm
by TwitchyDoc
Noturnus: Great!

Guys, we still need a few more participants! Please, find your time and contribute to this unique study.

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: December 30th, 2012, 11:54 pm
by aztwitchy
just saw this...I will fill in my data tomorrow. too twitchy tonight :)

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: December 30th, 2012, 11:54 pm
by aztwitchy
just saw this...I will fill in my data tomorrow. too twitchy tonight :)

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 3rd, 2013, 1:27 am
by TwitchyDoc
IMPORTANT: For their statistic purposes, now people without EMG can contribue - so it is just about filling the questionary mentioned in the original post. Please do so, it will take you just a few minutes.

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 3rd, 2013, 4:27 am
by christo
I will complete the form and send my EMG and bloodwork asap. Also, I am only 3 month in that's why I didn't answered earlier. My concern is that I am still not sure to have BFS since my neuro said ALS could not be ruled out so early when he did my EMG (he also said that he think that it's probably BFS). Do you think I should send my data anyway ?

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 3rd, 2013, 4:45 am
by TwitchyDoc
Christo, yes, definitely. Now they want to collect cases of people suffering from BFS, it looks like its very few of them.

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 4th, 2013, 12:44 pm
by aztwitchy
I am waiting for my doctor to scan and send me my emg results....why is the medical field so slow!!!!!?!?!?! they sure send out the bills faster than my results !!! :evil: :evil: :evil: :evil: :evil:

once i have them I will send them in. thanks for organizing this and bump for more people to get off their bums and help us out!

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 5th, 2013, 7:16 am
by christo
Form completed and sent with scanned emg, I will send blood works as soon as my doctors sent them to me.
Bump this thread, people here please support the initiative

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 6th, 2013, 11:15 am
by acct
Can you do the questionnaire without submitting medical records and count for study?

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 6th, 2013, 1:39 pm
by christo
As far as I understand Yes :)

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 6th, 2013, 2:00 pm
by TwitchyDoc
Yes, even without the medial records but if you have them, send them because then they can be sure you are not just "fake" response. I think all of us should really do that, the anxiety here would be much lesser if this was published earlier..so just join and participate, please..for your own good :)

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 6th, 2013, 4:31 pm
by christo
I really dont understand why there is not more people answering. Come on, it's our chance and this community is the perfect lab. Let's turn all this fear into something good. Maybe we could ask the admin to mass email the members ?

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 6th, 2013, 5:05 pm
by Rtw
I'd love to participate - but I am supposed to go back to the neuro in 6 months (due to reflexes, he doesn't really seem all that interested in my twitches...). Would that still qualify as BFS?
Also, getting video anywhere but the lower legs is tough - mine are quite random/unpredictable elsewhere, except when I have a hotspot on occasion. Would have to have my husband run to me with the camera (or wake him up at night) lol. Maybe just above knees/lower thighs would work. Also, can we black out our names on the medical records?
Also, to do meaningful statistics, they need many more participants!!! Otherwise we'll get more case studies (of which these authors have done quite a few, including some that scare all of us a lot).

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: January 7th, 2013, 2:39 am
by TwitchyDoc
Rtw, the video is just optional and it makes the doctors sure that you are really having fasciculations. Coming back in neuro does not mean anything, most of them will follow us just to be sure, also please participate even if it was just filling the form.
You can blank out your name of course, but be sure that this study is performed by ALS specialists and they guarantee your name will not be used anywhere. I hope I copied this claim to the document. Anyway, you can put Sarah X. instead of your full name. In the study, they will use assigned ID numbers either way.
Thank you for your participation!

Re: The offical BFS study ready for us to participate -IMPOR

PostPosted: February 10th, 2013, 12:44 pm
by TwitchyDoc
Guys,

Unfortunately it looks that the study will not be done - there is simply not enough real patients and our sample is small too. They did notice it is an extremely rare condition in the presentation we have (kinda makes sense, 4000+ users all around the world in 10 years on this board, considering only part with widespread presentation).

It is not closed yet and they will just wait. However, I would like to thank you all who participated.