Page 2 of 5

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

PostPosted: November 19th, 2012, 4:52 am
by lcanela
I just filled the form. I will try to find my medical results as I dont remember where they are now. It is nice to know finally some one is studying this.

How long would a study like this take to finish?

Cheers.

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

PostPosted: November 19th, 2012, 5:14 am
by TwitchyDoc
They are following their own real patients so i do not when they are planning to stop. As for publication, usually it takes months before it is reviewed and publised in e.g. Oxford Brain Journal.
If you find an EMG report or at least the exam conclusion where the neurologist noted the fasciculations, it would be perfect.

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

PostPosted: November 19th, 2012, 6:21 am
by chrissi
Where is the "g" ?

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

PostPosted: November 19th, 2012, 6:27 am
by TwitchyDoc
Yeah, the muscle group "g" leave please empty. I was creating the table for them and did not notice they did not use "g" letter. So it is fine to leave blank.

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

PostPosted: November 19th, 2012, 6:37 am
by chrissi
OK :mrgreen: was just iritated

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

PostPosted: November 19th, 2012, 6:41 am
by TwitchyDoc
:) Yeah, I must admit that I was supposed to check and prepare the questionnaire for us but I was so excited that I just did the quick translation, removed that picture with table and created a real table which you can write to - I just wanted to get it started as soon as possible. Sorry for the mispellings and issues, yet I believe it will have no impact on the final result.

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

PostPosted: November 19th, 2012, 6:29 pm
by BFSBurger
The limit for 1 year etc. was removed, the spectrum of patients will be mroe variable then.

Do you mean time minimum of 1 year?

Am I able to participate even though I am only at 7 weeks?

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

PostPosted: November 20th, 2012, 5:11 am
by lcanela
Hi All, maybe I am not undestanding this correctly but the frecuency scale will not be accurate enough for me...

I. About Fasciculations
frequency scale:

0 - Not have fasciculations.
1-Once per month.
2-Two or Three times per month.
3-Once or Twice per week
4- 3-6 days per week
5-Daily.

Aren't we missing?:

6 - every 6 hours
7 - every 2 hours
8 - every 1 hour
9 - every 30 minutes
10 - every 15 minutes
...
X times per minute... would be the most accurate for me.

I would say most of us will answer "5 - daily" in most of the cases as twiching only once a day or less than that would be for me like being cured.

Is this related to Hotspots only?

Advise please.

Thanks.

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

PostPosted: November 20th, 2012, 7:11 am
by TwitchyDoc
Icanela, just put 5 - daily. The researches put it this way IMHo because daily fasciculation in whatever muscle is clearly abnormal (no matter if its 10 or 100 per day) while 1 can be considered a normal.
You can put a comment there, I did that too. Just do not alter the scale as its normalized for them. I put 5 or 4 everywhere except for face, where I put 3.

EDIT: Remember there is also severity scale, so you can put 3 (continous) where you have it this way.

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

PostPosted: November 20th, 2012, 7:29 am
by lcanela
Thanks for your reply I will do wat you ave suggested. Anyway I am not sure how much will it help them with the study.

In my particular case the twiches just rotate, I mean, the last 3 days I have had fasciculations on my both eyelids and my arms, plus the other radom all over my body which could mean 1 per minute at any place, but tomorrow I could start a new cicle in which the focus is only in my feet or my arms plus the random others.it seems like it is localized for a while then it moves to a different place. The only fixed thing for me is that once every week I normaly get a hotspot on my right triceps which takes between 3 to 24 hours to leave (improving a lot when using Magnesium oil and trying not to move it. normaly the next day after I have sleep it is ok). Anyway guys i have realised that the more I come here the worse i am, and when I just do not think about it I dont remember having twiches, I am sure I ave but maybe I just dont realize it. mayba i have had this my whole life? and only after readi9ng bad things on internet I started thinking about it. i remember when i was a child i told my mother i had those twiches ad she told me this is normal and everyone has it so I never thought about it, but normally a hotspot would lasta only 20 seconds. Now it can last 2 days. Guys we just need to take life more relaxed and thanks god we do not have a really bad disease. I hope this research will give us more tools to cope wit it or even cure it.

Cheers guys! be happy!

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

PostPosted: November 20th, 2012, 9:46 am
by BFSBurger
Canela: Amazing post. Agreed.

Twitchy - do you want me participate even though you feel mine is caused by drug toxicity?

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

PostPosted: November 20th, 2012, 10:00 am
by TwitchyDoc
BFS burger: why not, mentioning the medication you took before the onset of BFS can be actually helpful. I cannot remember now if you have see a neurologist beucase a report/EMG would be needed. It is up to them whether or not they will use your data if you are twitching just two months. But medication induced or not, it is there and cannot be explained reasonably (I mean if it persists, which I guess it will).

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

PostPosted: November 20th, 2012, 12:22 pm
by BFSBurger
Well apparently i had muscle spasms going back several months, but they were so sporadic that I ignored them. I found an email in June mentioning them to a friend. Had totally forgotten. They didn't become frequent until September. I had other symptoms that were much more prominent prior to september.

I'll fill it out. I do have EMG results. And MRI results.

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

PostPosted: November 23rd, 2012, 5:36 am
by TwitchyDoc
Could you guys let me know who has already sent the data to the researches? I hope I was not the only one..

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

PostPosted: November 23rd, 2012, 7:11 am
by Yuliasir
I did the questionnarie but strange thing I found I am afraid to search for my EMG!!! however it is quite clean 6)))) can not push myself really :(((( well found it and will do a copy right now!!!!!!!!!!!!!!!!!