BFS Survey

Information about how to manage or reduce the severity of BFS symptoms

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Re: BFS Survey

Postby acudoc11 on December 27th, 2011, 9:22 am

About 5 months ago I entered the world of BFS and have gone through what many before me have in searching for the right type of magnesium (amino acid chelate); plus CoQ10 (ubiquinol); B1; and B Complex. Several times I searched and tried a number of Chinese herbal formulas as that is my domain with no real benefits. I rarely use acupuncture needles and for the past 17 years worked in soft tissue pain syndromes reviving and modernizing the ancient use of gua sha (frictional use of a stone) and ba guan (empty cupping). But that doesn't hit the mark with BFS. The other major part of my practice as a Doctor of Oriental Medicine/Acupuncture is the use of Chinese materia medica. The general category of diagnosis of BFS is internal-wind with variations of cold-damp or heat-damp along with deficiencies of blood, yin and/or qi and the organ-system primarily related to this is the LIVER-SYSTEM. So I went back and hit the hundreds of books in my library and started studying this. One might ask....why now after 17 plus years are you studying? As practitioners we often address all kinds of ailments. BFS was not only not one of my specialties...I had actually never come across it before. I have been treating type 1 (genetic) diabetics and that has been an eye opener especially with my specialty. Anyway...back to BFS. There is hope. After searching the tens of thousands of possibilities of herbal formulars (there are actually about 60,000) and based upon my particular set of signs and symptoms I arrived at three formulas which I made myself from concentrated (5:1) extracts. Began taking them yesterday and finally there is a substantial decrease in the fasciculations. So much so that I wanted to suggest that any of you BFS'ers go see a practitioner who frequently uses Chinese herbs. Acupuncture needles are ok adjunctively but will not correct BFS. For this resolution, in my opinion....appropriate herbs are needed.
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Re: BFS Survey

Postby raindog on December 28th, 2011, 4:37 pm

acudoc11 wrote:About 5 months ago I entered the world of BFS and have gone through what many before me have in searching for the right type of magnesium (amino acid chelate); plus CoQ10 (ubiquinol); B1; and B Complex. Several times I searched and tried a number of Chinese herbal formulas as that is my domain with no real benefits. I rarely use acupuncture needles and for the past 17 years worked in soft tissue pain syndromes reviving and modernizing the ancient use of gua sha (frictional use of a stone) and ba guan (empty cupping). But that doesn't hit the mark with BFS. The other major part of my practice as a Doctor of Oriental Medicine/Acupuncture is the use of Chinese materia medica. The general category of diagnosis of BFS is internal-wind with variations of cold-damp or heat-damp along with deficiencies of blood, yin and/or qi and the organ-system primarily related to this is the LIVER-SYSTEM. So I went back and hit the hundreds of books in my library and started studying this. One might ask....why now after 17 plus years are you studying? As practitioners we often address all kinds of ailments. BFS was not only not one of my specialties...I had actually never come across it before. I have been treating type 1 (genetic) diabetics and that has been an eye opener especially with my specialty. Anyway...back to BFS. There is hope. After searching the tens of thousands of possibilities of herbal formulars (there are actually about 60,000) and based upon my particular set of signs and symptoms I arrived at three formulas which I made myself from concentrated (5:1) extracts. Began taking them yesterday and finally there is a substantial decrease in the fasciculations. So much so that I wanted to suggest that any of you BFS'ers go see a practitioner who frequently uses Chinese herbs. Acupuncture needles are ok adjunctively but will not correct BFS. For this resolution, in my opinion....appropriate herbs are needed.


Ive heard good things of Rick Simpson oil , unfortunately its not readily available. :(
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Re: BFS Survey

Postby pbohan on December 30th, 2011, 4:20 pm

We have 140 participants - the data has been uploaded to my website. Please join the survey if you have not already done so. http://patrickbohan.home.bresnan.net/BFS.htm
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Re: BFS Survey Update

Postby pbohan on January 6th, 2012, 5:52 pm

We have completed the medical paper we are going to submit for publication. I have placed it on my BFS website: http://patrickbohan.home.bresnan.net/BFS.htm. Hit the link BFS Medical Paper. Save it as a .doc or .docx version. We are currently working on the cover leter to offically submit the paper. It is a long shot to get published, but we will try. If you have not already completed the survey, please do, we have 142 people in the survey. I will do a follow up study if we get more people in the survey. I would like to give a shout out to fellow sufferer Mitra Wagner who helped me a great deal with the paper. Let us know what you think.
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Re: BFS Survey

Postby tiggida on January 6th, 2012, 9:18 pm

pbohan,
wow, great job! I read the survey and understood it to the best of my ability. Thanks for doing this. I feel like I fit into several of the bfs catagories. I hope this can get published and looked at seriously.
Tanya
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Re: BFS Survey

Postby pbohan on January 7th, 2012, 9:55 am

Thanks Tanya,

I am glad that you are pleased with the results and best of all, you understand what we wrote - sometimes that can be the difficulty in technical papers - not to make them too technical. I too believe I am a combination of types. In any event, if we can continue to get more people in the survey, I can try to do a follow up and see if trends are changing and redefine the groups. I hope the paper gets published too, at least to give this syndrome exposure. However, very few papers get chosen for publication so we need to be realistic. Mitra has been a great help to me, so we need to give her some well deserved kudos.

Patrick
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Re: BFS Survey

Postby mwagner on January 7th, 2012, 1:11 pm

Thanks for mentioning me, Patrick, but what I did was so minor compared to your work and ongoing work on this. I think this paper is quite good, and is very interesting to us BFS sufferers. The statistics you have run are very meaningful (at least to me) and hopefully this will get published, or at the very least raise an eyebrow to this idea that BFS is multi-faceted in the neurology world.

I can't thank you enough for the work you have done on this, and all the time you have spent.

Mitra
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Re: BFS Survey

Postby tiggida on January 7th, 2012, 5:53 pm

thanks for your work on this too mitra. :D
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Re: BFS Survey

Postby acudoc11 on January 8th, 2012, 8:57 pm

Patrick
Do you think that the survey might be expanded to include some very possible relevant areas?
Richard
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Re: BFS Survey

Postby acudoc11 on January 8th, 2012, 8:58 pm

That was not a condemnation of the survey/paper as it is.......it is very informative and useful.
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Re: BFS Survey Update

Postby pbohan on January 9th, 2012, 5:14 pm

Hi All,

We now have 145 people in the survey. I have uploaded the latest excel file of data to my web site.

Yes, it is possible the survey can be expanded. It seems that well over 20% people believe they have a trigger / cause which is not outlined. Also, over 10% of the people think there is remedy missing that works well for them. Mayber there is a few things that are major being overlooked. If anyone has feedback on this, let me know. The hardest issue may be to get input from all the people that answered these questions this way in the survey. I am open for suggestions.
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Re: BFS Survey

Postby acudoc11 on January 9th, 2012, 5:22 pm

Hey Patrick......I think you know some of my thinking regarding animals and other blood tests.. I suspect there are many contributing possible factors to at least the BFS twitching. Richard
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Re: BFS Survey

Postby pbohan on January 20th, 2012, 4:13 pm

We now have 149 people in the survey. Hope everyone has gotten a chance to read the paper and results.
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Re: BFS Survey Update

Postby pbohan on January 27th, 2012, 5:47 pm

We now have 152 participants in the Survey. Please email me if you have an update to your initial survey answers. Also, I want to let everyone know I have officially submitted the results of our survey for publication. And once again, I want to thank Mitra for all her help!
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Re: BFS Survey

Postby pbohan on February 13th, 2012, 12:48 pm

We now have 154 people participating in the survey and that excel data file has been updated and loaded on my website. Our paper has been twice rejected, but I will keep trying journals. Mitra is going to help rewrite the manuscript to fit magazine requirments, so we will try this down the road if the journal stuff does not work.
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