The Misconceptions of BFS (Follow Up)

I submitted my essay “The Misconceptions of Benign Fasciculation Syndrome (BFS)” for publication in the magazine “Neurology Now” under the Speak Up section. The editor, Mike Smolinski, confirmed he received my essay for consideration on June 22^nd. The magazine claims it notifies people of the outcome of their submission in 30 days. Despite two follow up messages I have gotten no response as we approach 3 months of waiting. I also submitted the essay to the Journal “Practical Neurology” under the Me and My Neurological Illness section of the journal. I got quick rejection with one reviewer’s (neurologist) comments. Below is that rejection email and my email response to the rejection email on the reason why we will never make any progress on BFS – the reviewer, like every neurologist I visited, feel they understand BFS than any of us that suffer from the disorder. I am tired of these egotistical neurologists telling me what they think they know about BFS. You be the judge, but people with BFS deserve better treatment than what I am getting from neurologists, journals, and magazines.

-----Original Message-----

From: onbehalfof+info.pn+bmjgroup.com@manuscriptcentral.com [mailto:onbehalfof+info.pn+bmjgroup.com@manuscriptcentral.com] On Behalf Of info.pn@bmjgroup.com

Sent: Wednesday, August 29, 2012 5:25 AM

To: pbohan1@gmail.com

Subject: practneurol-2012-000421 Manuscript decision Me and my neurological illness

29-Aug-2012

Dear Dr. Bohan,

Thank you for submitting "The Misconceptions of Benign Fasciculation Syndrome (BFS)" (# practneurol-2012-000421) to Practical Neurology. Unfortunately we are unable to offer to publish this article. We sought an expert referee for comment and have discussed the article between the editors but do not feel we can place the article in the journal. You will appreciate we receive many more submissions than we are able to publish.

Thank you for considering Practical Neurology for the publication of your article.

Yours sincerely

Prof. Phil Smith

Editor, Practical Neurology

Reviewer(s)' Comments to Author:

Reviewer: 1

Comments to the Author

As a neurologist with an interest in this syndrome, I sympathise with him. His management over the years should have been better and he was clearly unfortunate with the opinions he received. Treatment, particularly of cramping, can be highly effective but he does not discuss any such approaches. I do not believe that stress causes this syndrome, but as with most chronic disorders it undoubtedly exacerbates the symptomatology.

My Response:

Dear Phil,

I do not understand the reviewer feedback - it does not give me a reason for not publishing the article / essay. The reviewer's comments clearly state my issue with BFS: "His management over the years should have been better and he was clearly unfortunate with the opinions he received." This clearly states why the article should be published - neurologists are providing the wrong kind of feedback to BFS sufferers and it should be corrected. The only way it can be corrected is if more attention is brought to the disorder. If the reviewer really had an interest in the syndrome he would want to publish this to correct this misconception.

I do not want sympathy, I am frustrated. Since the neurologists I saw said what I have is "no big deal" I was not provided any treatment methods or advice for any symptoms including cramping to talk about in the article. It is impossible to talk about something in an 800 word essay that did not happen. So I do not understand the reviewers point about elaborating on treatment methods.

An 800 word essay is not long enough to cover the hundreds of different drugs, methods, herbs, supplements, diet, etc. I have tried on a trial and error basis with the oversight of my general practitioner (I gave him the ideas based on my research and he overlooked the experiments). I have tried many combinations and dosages of anti-seizure drugs, supplements such as vitamin D, CoQ10, magnesium, quinine, potassium, I have tried and still do yoga, I am eating a diet high in fruits and vegetables, and so forth. If you want a paper on this, I can surely write one but it misses the point. These ideas, treatments, and methods were not prescribed or over looked by neurologists. Besides, the bottom line is that I still suffer from paraesthsia, twitching, cramping, and other BFS symptoms 24/7.

If you feel my case is isolated and other BFS sufferers are being diagnosed and treated properly you should go to the aboutBFS site on the internet and BFS site on Facebook. You will see there are hundreds of people that are looking for answers and getting none.

The reviewer says "I do not believe stress causes BFS". "Believe" is the key word - he does not know for sure. Once again this tells us one important thing about BFS - We do not know much about it. We need facts and not what a doctor "believes" is fact and that is the problem with BFS. Doctors have their own opinions about BFS, but no facts to support them. And what’s worse, we will never get any facts if you do not publish something about the disorder.

The reviewers’ comments infuriate me because it only reinforces my point that we know little about BFS, but doctors seem to "believe" they understand what is going on inside me and hundreds of others just like me. This is another misconception about BFS and simply put this is a bad medical practice. Secondly, the reviewers’ comments are no different than the three neurologists I have visited – they think they understand the disorder when they do not. The reviewer should be ashamed of their comments and you should be ashamed for sending them to someone who suffers from this disorder. I am extremely disappointed and frustrated by yet another neurologists’ "know it all" opinion about the disorder. This has got to stop.

Sincerely,

Patrick Bohan