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.zipHow 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