Complaining nobody knows about BFS - join the official study

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Complaining nobody knows about BFS - join the official study

Postby TwitchyDoc on January 28th, 2014, 4:25 am

Today I got a response from prof. Carvalho, stating that he has too few results for the BFS study - many received the form but most people never replied back.

Guys, we are complaining doctors know nothing or too little, we are scared because there is no solid evidence in literature or papers to support what we think...so lets do it, dedicate some times to the study, (do not focus on the presentation, I did it for them with typos).

I seriously do not understand why so little responders. This is something we all were looking for in our dark days, some scientific paper from authorities that could reassure us..do it for us and for next twitchers..and for neurologist who will educate about this condition!

The original thread:
viewtopic.php?f=3&t=18339

Just follow the instructions in the main thread and send them the results.

They have their own real patients, our data cannot be of course used with the same relevance but they do need them.
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Re: Complaining nobody knows about BFS - join the official s

Postby leaflea on January 28th, 2014, 10:53 am

I didn't know about this survery, just the other one on here. I will try to gather my results and send them in.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Complaining nobody knows about BFS - join the official s

Postby Rothhaar on January 28th, 2014, 11:51 am

Hi TwitchyDoc,

I would really like to participate. The only problem is that I didn't get the reports about EMG and blood test results from my two neuro visits. Hence I could only provide data by filling in the questionnaire. Would that be enough?
In addition, both just told me that I had "benign fasciculations". Does this already count as a valid BFS-diagnosis, which allows me to participate in the study?
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Re: Complaining nobody knows about BFS - join the official s

Postby TwitchyDoc on January 28th, 2014, 3:54 pm

Rothkaar: sure, at least your data will be used for frequency and distribution of fasciculations. EMG and blood tests would be the best but they are not required. Remember there is no official BFS diagnosis, BFS does not exist in disease classification so it does not really matter. But if you were told it is benign, that is enough. Remember they will not do study about us but use our data to support their statistics. Obviously they cannot know whether we are faking the results (but this could be the same in case of Mayo which was then done over the phone).
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Re: Complaining nobody knows about BFS - join the official s

Postby js1 on February 3rd, 2014, 6:04 pm

I'm sending mine over now. Thanks for the reminder!
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Re: Complaining nobody knows about BFS - join the official s

Postby TwitchyDoc on February 11th, 2014, 12:39 pm

Guys...really? I managed to get leading ALS specialists to finally produce a serious paper about BFS (no, I'm sorry to say that but that "famous" Mayo was just a retrospective phone call survey lacking EMG data, having only 30 patients with generalized fasciculations and following some patients up to 32 years while some only a few years, etc.) and all you had to do was to fill in a simple questionnaire and -if possible - scan your EMG/blood results.

You keep sending me PMs asking why in the last few months there is an increase of papers presenting fasciculations as an early sign of MND or findings that fasciculations precede denervation etc. What do you want me to say? I do not know, obviously things are more complicated but the point is, I do answer your messages, giving medical reasoning and reassurance as much as possible.

You will search PubMet and dig for new findings, get anxious, PM me "how come ....". I get it. But for the sake of all of us, I wanted you to participate in this study. Most likely, they will not finish the study as they simply do not have enough data - only a few BFS patients (and over 30 ALS patients during that time - BFS is common, really?) and data from several people from here.

I find it very selfish: you have the opportunity to participate in a study that could provide solid evidence for all neurologists and somehow officially coin BFS, it would help many of us and future twitchers. But you will not do that, you do not have a few minutes to fill in the questionnaire and scan your EMG/blood if possoble, yet you do have time to moan about your fears or stuff you read.

I'm done, please do not send me PMs asking stuff, I did enough already, I really wanted to help and organized the whole thing.

Sorry to those who participated, I am just disappointed. Or at least we can see how rare this condition is if we cannot get more then 10,20 responders in more than a year!

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Re: Complaining nobody knows about BFS - join the official s

Postby christo on February 11th, 2014, 2:15 pm

Well, I am with twitchydoc on this one. I did send all my data and I am also disappointed that not enough did so.
I mean come on, there are thousand of members (and I am sure a lot more guest who will never register) and we can't get some hundred participants ?

We have everything to win with this study because you can't find ALS where it is not, and ALS is not on this board. I don't care if there is more study every year presenting fasics as an early sign of MND, because we are all living proof that it's obviously not true.
Come on, let's prove them they are wrong. Send you are data, give 10 minutes of your time and help all the future twitchers.

Hoping to see some "Just sent my data" following this post.

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Re: Complaining nobody knows about BFS - join the official s

Postby MarioMangler on February 11th, 2014, 9:38 pm

Personally everything anyone needs to know about BFS has already been researched and written up in BFS in a Nutshell. And that document has been stickied and prominently posted here on this very website for nearly ten years. I just find it rather silly that people are still seeking answers and still pushing for more research when we all know *beep* well they are going to find what every oldtimer here already knows. That is why I choose not to participate, and why I am guessing a lot of people choose not to participate. The #1 rule when you truly do accept your BFS is "stop self testing and researching and obsessing so much about neurology!" So by very definition participating in a study like this is such a backwards slide for most of us that I would consider it to be emotionally and mentally damaging. In any case, you are asking why people choose not to participate and that is why for a lot of us. I already know why I have BFS. I already know what BFS is. And I choose not to go back into the world of doctors and studies and neuros and testing, thank you very much. Been there, done that. You learn to move past that.

And this isn't even getting into the whole "Top ALS doctors are doing a paper on BFS!" thing, which just subtly suggests to people that ALS and BFS are in any way similar and are in any way related. They aren't, and personally I take offense to any sentence whatsoever around here that suggests that they might be. Personally I don't care what top ALS doctors have to say about anything. What they study has nothing to do with us. I don't care what top astronomers think about BFS either.

I don't think not participating in a study like this is selfish. Personally I think it is heartening. People are learning to move on and are learning that you don't have to be slaves to doctors and research and studies and neuros anymore. You have a choice to move past that. As a long time member of this board, who knows all the patterns and knows exactly what all the big topics will be around here at any one time, I could not be more thrilled that people are deciding they have no interest in being a guinea pig in the neurology world anymore. To me, nothing shows more progress than that.
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7. Yes, you will be fine
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Re: Complaining nobody knows about BFS - join the official s

Postby Rothhaar on February 12th, 2014, 4:32 am

@TwitchyDoc:

I think Mario is spot on to explain the reasons why many people are so reluctant to join the study:
Those among us who are still caught by fear and anxiety think about other things than a scientific study on BFS and those who have moved on ... well ... have moved on and don't want to think about BFS any more.

So the potential participants just the few of us who are still somehow caught in between, i.e. who have overcome their fears mostly, but not completely, who can rationally think about BFS, but still have relapses into anxiety from time to time (from what I have read in your posts, I would guess that this description also fits to you).

I would still strongly recommed that people participate, because like you I think that there should be much more research about BFS. In Germany for example most GP's and even most neurologists don't seem to have a clue about it (just the neuromuscular specialists know that it exists) and this definitely must change!
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Re: Complaining nobody knows about BFS - join the official s

Postby johnnythejet on February 12th, 2014, 11:59 am

MarioMangler wrote:Personally everything anyone needs to know about BFS has already been researched and written up in BFS in a Nutshell. And that document has been stickied and prominently posted here on this very website for nearly ten years. I just find it rather silly that people are still seeking answers and still pushing for more research when we all know *beep* well they are going to find what every oldtimer here already knows. That is why I choose not to participate, and why I am guessing a lot of people choose not to participate. The #1 rule when you truly do accept your BFS is "stop self testing and researching and obsessing so much about neurology!" So by very definition participating in a study like this is such a backwards slide for most of us that I would consider it to be emotionally and mentally damaging. In any case, you are asking why people choose not to participate and that is why for a lot of us. I already know why I have BFS. I already know what BFS is. And I choose not to go back into the world of doctors and studies and neuros and testing, thank you very much. Been there, done that. You learn to move past that.

And this isn't even getting into the whole "Top ALS doctors are doing a paper on BFS!" thing, which just subtly suggests to people that ALS and BFS are in any way similar and are in any way related. They aren't, and personally I take offense to any sentence whatsoever around here that suggests that they might be. Personally I don't care what top ALS doctors have to say about anything. What they study has nothing to do with us. I don't care what top astronomers think about BFS either.

I was trying to sum up my thoughts on this topic until Mario read my mind......Thanks brothah!
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Re: Complaining nobody knows about BFS - join the official s

Postby christo on February 12th, 2014, 12:32 pm

I understand what you say Mario, I agree in a way but hey... you choose not to participate because you have moved on, that's not really nice for the future new twitchers.
My point is if we (meaning the members of this board) don't participate, others will still publish *beep* studies about 1 or 2 people here and there that may have developped some kind of mnd after having fasics for some time. This kind of study will again afraid the new twitchers.
On the other side, if we participate, the study could make it clear fasics are in most case harmless and benign. And we could then post the result on the board, thanks to the members here, it would be great !

Also you seem to have an issue with the authors of the study. I think you should not, because they kindly answered one member here and the post is now sticky. They are not the bad guys...
Yes, BFS in a nutshell is a great post, but it' can't replace a scientific study. When you go to see a neuro, he will not use this kind of ressources, even if they are quite accurate. But if there is a good study on BFS, neuros will use it for sure.

Whatever you think, whatever you choose to do, one thing is for sure. This board, with its members, is the only one community that could make a study on BFS work.

I am sorry to insist, but I would not if I thought it was not worse it.
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Re: Complaining nobody knows about BFS - join the official s

Postby Yuliasir on February 12th, 2014, 12:47 pm

agree with Christo

ALS is not the same as BFS, and who know this better than neuromuscular specialists :) I am well over ALS fears but i participate (I send docs at the very first call) and I think it is useful.

as TwitchyDoc said, he has tons of PMs asking about more and more studies about fascis as early sign of ALS.
as no one of us vets (over 2-3 years I think) had developed ALS, whic is particualrly true at least for vets visiting this site of Facebook group, we may be useful even with our early reports to see and confirm the truth - fascis without weakness and other infavorable signs on EMG/clinical do not point to ALS, I suppose this statement did not changed :)))
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Re: Complaining nobody knows about BFS - join the official s

Postby johnnythejet on February 12th, 2014, 2:09 pm

christo wrote:On the other side, if we participate, the study could make it clear fasics are in most case harmless and benign. And we could then post the result on the board, thanks to the members here, it would be great !

This whole line of thinking is confusing to me. When I read it, this is what I see: "If we send them results about our BFS, they can report on it so we can post it here and read the results."
Well, we already know the results. This community is the single best, most comprehensive source of information on our condition. Thousands have been through here with the same crappy BFS story, and there is no doubt that BFS is, in fact, BENIGN (by definition as well as empirically shown via our experiences). In addition, we've had droves of conversations with top neurologists who have confirmed what we already know. The reasons people here have fears are due to lack of understanding of BFS (and how it differs from ALS, etc.), dissemination of half-truths, false statements and irrelevant reports, and, most importantly, anxiety issues. Having a new report that formally tells us what we told the author isn't going to fix anything.

That being said, I understand there are many others who sincerely want to support this study and I respect that. This is just one of many opinions on the subject, and one that is shared by some of the old timers.
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Re: Complaining nobody knows about BFS - join the official s

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