The offical BFS study ready for us to participate -IMPORTANT

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The offical BFS study ready for us to participate -IMPORTANT

Postby TwitchyDoc on November 11th, 2012, 4:21 am

Dear all,
Just to remind, we have the opportunity to be the secondary source of data in the first offical in-depth BFS study, done by ALS experts (prof.Carvalho himself works on this one). The study isaimed at BFS itself, its presentations, possible causes and other implications. As we know, many sources say tongue fasciculations are not benign, benign fasciculations affect just lower legs etc. - this study should prove the opposite and thus help us, neurologists and future twitchers as a solid evidence for reassurance and education.

The questionnaire can be downloaded here (my friend provided this place, so its free and forever). Sorry for English, I translated their form fast.

http://www.chmatakov.cz/bfs/BFSQ.zip

How to proceed?
1. Download the questionnaire and fill it in the file, no need to print it. It is detailed and contains also rating for each muscle groups.
2. Scan your EMG results, blood test results, ideally the latest ones. For EMG if you have the actual results (graphs, values) its better than conclusion. Do not forget to agree in the questionnaire with using this data.
3. Important: They would need an evidence that what we have are really fasciculations (many lay people confuse that with myoclonic jerks, tremor etc.) - if you have a YouTube video, please provide a link (and agree in the questionnaire with that). Please try to use anything else than lower leg - e.g. Matts' shoulders video is great one.
4. Put all inside one ZIP/RAR file.
5. Send to professor Carvalho and CC the doctor who is the key contact person:

[email protected]
[email protected]


Thank you all, I hope this will help a lot of people, educate the neuros and yield a benefit for all of us.

Docen
Last edited by TwitchyDoc on February 12th, 2013, 2:52 am, edited 4 times in total.
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Re: The offical BFS study ready for us to participate -IMPOR

Postby bobajojo on November 11th, 2012, 10:15 am

Docen,
Very nice work! I have my survey filled out and will just await word from you as to where to send it. Thanks again for organizing this!
-Matt
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 11th, 2012, 11:50 am

Thanks Matt! I will update as soon as I they let me know how should we send the results. I expect that scanned survey will be enough ;) BTW, your videos will be pretty valuable ;)
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Re: The offical BFS study ready for us to participate -IMPOR

Postby chrissi on November 11th, 2012, 1:17 pm

If Matt sends Videos of all his hot spots, you should prepare them to make sure to bring a huge bucket of popcorn and coke to the lab.... This would be an evening- filling programme.
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 11th, 2012, 1:39 pm

chrissi: fortunately, just one simple video is enough to be sure one is experiencing fasciculations. Matts' shoulder one is the perfect, it clearly shows the muscle bundle twitching. If you do not have any yet, please try to record the ones above the knees (ideally arms, hands, back, shoulders, neck).
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Re: The offical BFS study ready for us to participate -IMPOR

Postby chrissi on November 11th, 2012, 3:35 pm

I will send my forearm one :)
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Re: The offical BFS study ready for us to participate -IMPOR

Postby chrissi on November 11th, 2012, 3:42 pm

Will they have someone to translate my Results or shall I translate myself?
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 11th, 2012, 4:01 pm

chrissi, - I think for the sake of objectiveness - I was told that mainly they are interested in EMG results, blood results (because of possible Ca/Mg issues) and neuroimaging, ie things that do not need any translation. But if you attach scan of neurological exam (I will do that), its 80-90% in latin and unified scales so they will easily see whether or not you have e.g. hyperreflexia, clonus, absent reflexes etc.
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 11th, 2012, 6:55 pm

An update:
As you may noticed, the fasciculations severity section contains the muscle groups figures but it is a picture so you cannot enter data. They will provide us with an updated version, most likely table for each muscle group.
Also no print will be needed. I will update when I recieve the new version and re-upload.
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Re: The offical BFS study ready for us to participate -IMPOR

Postby Yuliasir on November 12th, 2012, 3:11 am

downloaded, but realized I need to translate a hip of tests and EMG conclusion :)))
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 12th, 2012, 4:22 am

Yulia: Thanks, please wait for the updated version of document, as I mentioned above, in this one ,they did not realize we cannot "tick" muscle groups in the diagram (section "fasciculations severity").
You do not need to translate if you have the actual results (graphical representation of curves, amplitudes..all the values). So they could interpret it.
Thanks all for participation!
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 14th, 2012, 4:25 pm

Updated, the study has officialy started. Please download the form again and read the updated steps to proceed. Now its up to you / us. The more of us, the better!
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Re: The offical BFS study ready for us to participate -IMPOR

Postby BFSBurger on November 14th, 2012, 9:20 pm

Twitchy do you want me to wordsmith this thing? There are some peculiar misspellings, wrong words, and combined words that should have spaces, etc.

Also - dont you have to have BFS for more than 1 year to fill this out? Should put that in your first post again.

I've only had mine for 7 weeks so I cant fill this out, right?
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 15th, 2012, 3:18 am

Yeah, there are typos and issues caused by OCR scan (like missing spaces or strange characters). The questionnaire is in Portugese for their real patients and this version in English I made just for us. They will get results by static analysis (1.C XXX) so its language independent as long as the order is correct. Sorry for the typos that I made during the transcript, the meaning is clear, though.
The limit for 1 year etc. was removed, the spectrum of patients will be mroe variable then.
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Re: The offical BFS study ready for us to participate -IMPOR

Postby TwitchyDoc on November 19th, 2012, 2:34 am

Data collection is still in progress, I got an email today from the researchers asking how many of us is joining. I could not answer that of course, but please if you have a time and ideally the EMG results to scan or at least clinical finding report noting "fasciculations", please participate.
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Re: The offical BFS study ready for us to participate -IMPOR

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