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

PostPosted: November 23rd, 2012, 7:32 am
by Yuliasir
Done and sent

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

PostPosted: November 24th, 2012, 4:11 am
by TwitchyDoc
Great, thanks. I hope more will participate (I kinda promised to them because of the responses in the original thread :)

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

PostPosted: November 24th, 2012, 6:07 am
by chrissi
I already filled in, but my scanner is broken so I need to get my results scanned in somewhere else

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

PostPosted: November 24th, 2012, 7:07 am
by bobajojo
Mine is all filled out and ready to go, just waiting to receive my full report from the Mayo clinic. As soon as I get it in the mail, I'll send it all off with a full library of twitching vids! -Matt

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

PostPosted: November 24th, 2012, 8:05 am
by TwitchyDoc
chrissi: I do not have the scanner at all, just took the picture on the even floor. With 10 Mpx camera its pretty fine.
bobajojo: thanks man!

At least we are 4..was expecting a bit more, hopefully others will join too.

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

PostPosted: November 29th, 2012, 5:27 pm
by bobajojo
Just received my info from the Mayo clinic and forwarded it on to Dr. Carvalho. If anyone else reads this and is willing to participate, please do! Although, he's going to be busy for the next few days viewing twitching videos :)

-Matt

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

PostPosted: December 4th, 2012, 1:46 am
by TwitchyDoc
Well, only 2 people participated so far what I have been told (which makes 3 with me) - please, if you can, join this study, most likely we will not have opportunity like that in the future.

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

PostPosted: December 4th, 2012, 12:46 pm
by bobajojo
I agree. I'm sure this will be an interesting study and potentially be of good use in the future to help calm newer twitchers!

If you've had an EMG but don't have the report, all you have to do is call your neuro and they'll mail it to you. C'mon, we can do better than just 3 of us! :D

-Matt

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

PostPosted: December 4th, 2012, 1:24 pm
by Lifewithbfs
TwitchyDoc wrote:Well, only 2 people participated so far what I have been told (which makes 3 with me) - please, if you can, join this study, most likely we will not have opportunity like that in the future.



I would like to join but, have not done EMG, I have nerv conduct study that is also on leg , would they accept

Thanks!!!

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

PostPosted: December 5th, 2012, 1:54 am
by TwitchyDoc
lifewithbfs: If you have at least the report from neurologist saying that your compaint is fasciculations (or that he noted fasciculations), then you are welcome to join. It is kinda strange to do just NVC - maybe you have had major sensory issues? If you have a video on YT, the better.


For the others: As Matt said, we can do better than just 3 of us. Especially important for tongue twitchers who have not any evidence (meaning literature) that this can be benign - this study should mention it. But we need you!

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

PostPosted: December 5th, 2012, 4:01 pm
by Lifewithbfs
TwitchyDoc wrote:lifewithbfs: If you have at least the report from neurologist saying that your compaint is fasciculations (or that he noted fasciculations), then you are welcome to join. It is kinda strange to do just NVC - maybe you have had major sensory issues? If you have a video on YT, the better.


For the others: As Matt said, we can do better than just 3 of us. Especially important for tongue twitchers who have not any evidence (meaning literature) that this can be benign - this study should mention it. But we need you!



Yes, I do have more sensory issues, I don't have any Video , has my twitch is very small , hardly any one can see, couple of time I told my PD, to look but he can't see, and just ask me to take muscle relaxer :twisted:

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

PostPosted: December 6th, 2012, 1:53 am
by TwitchyDoc
lifewithbfs: if your twitching is that minimal, why do you even call it BFS? I would say if you do not twitch in at least 3 regions frequently and daily, be happy but this study should be aimed on "severe BFS".

So I assume nobody else will join - this kinda sucks, people are asking for support and when they can do something for the others and medical community, they do nothing.

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

PostPosted: December 18th, 2012, 12:11 pm
by Noturnus
I will send everything to doctor Carvaloho email.
I am Brasilian and here we speak portuguese. Dr Carvalho speaks portugueese too so I think I dont need to translate the exams. am I correct?

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

PostPosted: December 18th, 2012, 12:25 pm
by TwitchyDoc
Noturnus, of course. Do not forget to CC the other doctor, thanks!

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

PostPosted: December 24th, 2012, 2:53 pm
by Noturnus
My data was sent to the doctors.