Tuesday, July 31, 2012

Benign Fasciculation Syndrome (Part I)

The following multipart article / research paper has nothing to do with politics. It is about a neurological disorder I suffer from so I wrote the following statistical analysis of the disorder. I have not had any luck getting the paper published, but will continue to try as our sample size in the survey of people with this disorder approaches 250 people. I hope to bring attention to the disorder.

ABSTRACT:

The purpose of this paper is to explore the statistical relationship between Benign Fasciculation Syndrome (BFS) symptoms, body areas affected by BFS, the potential causes of BFS, and potential remedies for BFS.

The method used was to collect data from a survey. Data was obtained from 161 people. Of the 161 (9 outliers) a total of 152 have been diagnosed with BFS. The data was modeled using a linear regression analysis to determine if there is statistical significance between symptoms, potential causes or triggers, body areas affected by BFS, and potential remedies.

The results from this data (Tables 1 through 7) show it is possible to identify nine unique forms of BFS that stem from a variety of triggers. Each BFS form has its own set of unique symptoms, conditions that make symptoms worse, and remedies that appear to work best.

To conclude, this paper will combat the fallacies about survey usefulness and accuracy and highlight inadequacies of controlled studies, clinical trials, and patient observation. Although BFS symptoms, on average, remain the same for BFS sufferers - only those sufferers whose trigger is stress related can significantly reduce symptoms over time. Many people who suffer from BFS claim multiple triggers have brought forth BFS symptoms. Their symptoms reflect a cross between different forms of BFS. For this reason, we speculate that it would be difficult to find a single cure for BFS.

INTRODUCTION:

Defining and understanding neurological disorders can be medically challenging. Benign Fasciculation Syndrome (BFS) is a disorder characterized by fasciculation or muscle twitching of unexplained causes. Other BFS symptoms may include muscle fatigue, cramps, pins and needles sensations, paraesthsia, muscle vibrations, headaches, itching, sensitivity to temperatures, numbness, muscle stiffness, muscle soreness and pain. [1] BFS is considered to be a disorder of Peripheral Nerve Hyperexcitability (PNH). BFS or PNH causes are not entirely understood. Some theories state that the cause of BFS or PNH may involve the potassium channel of the nerve terminal's inability to properly close its gates when a motor nerve impulse reaches the nerve terminal, resulting in a still-remaining active muscle fiber. [2] This imbalance is what causes involuntary impulses that consequently stimulate the nerve endings causing them to fire and twitch. [1,3,4]

OBJECTIVE:

Like many neurological disorders, there is no known cure for BFS. While this disorder is considered “benign” it contains symptoms that are very real and in some cases both psychologically and physically debilitating. [5] This is primarily due to the chronic and progressive nature of the disorder in some individuals. Most neurologists and doctors will tell chronic BFS sufferers that their symptoms are “no big deal”. This is a misconception about the disorder. The statistical analysis of BFS from our survey proves that symptoms in many people are chronic (high frequency and intensity) and progressive. One study claims that up to 1% of the population may suffer from BFS. [6] BFS for most people is benign and insignificant (no big deal), but those individuals with chronic symptoms 24/7, BFS can wreak havoc on their lives. Chronic BFS sufferers are prone to dealing with anxiety since their early onset symptoms are similar to other crippling disorders such as Parkinson’s disease, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), and even brain tumors. Because of their symptoms, BFS patients often have undergone advanced medical testing including Magnetic Resonance Imaging (MRI) performed on the brain as well as an Electromyography (EMG) to rule out other neurological disorders. [1] Based on a Microsoft Research Study conducted by White and Horvitz, there is a .50 probability that a quick internet search on “muscle twitching” leads them to sites related to ALS. Needless to say this causes a great deal of distress for the individual knowing the relationship of twitching and ALS. In fact, some fairly recent studies have cited rare cases of individuals who started with twitching and cramping symptoms and later developed ALS years later. [7] While these cases are extremely rare, the knowledge of them can cause continual anxiety in the chronic BFS sufferer.

Chronic BFS sufferers have similar symptoms to other neurological disorders including Neuromyotonia (NMT), Benign Cramp Fasciculation Syndrome (BCFS), fibromyalgia, Reflex Sympathetic Dystrophy (RSD), stiff person syndrome, continuous muscle fiber activity, continuous motor nerve discharges, and Isaac Syndrome, usually differentiated by an EMG. [1] For this reason many remedies attempted to relieve BFS symptoms are exactly the same as those remedies used for NMT, BCFS, RSD and other neurological disorders. [1] At this time there is no evidence that BFS sufferers are any more likely to acquire other more serious neurological disorders, such as ALS or MS, than any person without BFS. [4]

If BFS is “no big deal” in the eyes of most neurologists, then why do people with BFS go through advanced medical testing and take powerful medications such as anti-seizure, anti-depressant, sleeping pills, benzodiazepines, muscle relaxants and other strong medications to relieve symptoms? The answer is because there are people with extreme chronic cases of BFS.

What is being hypothesized in this study is that due to the unique symptoms of people afflicted with BFS, there may be variants to BFS. The objective was to identify the different types of BFS from various triggers in order to better understand the illness and its potential remedies.

20 comments:

  1. That was a very well-written article, Patrick. It’s really unfortunate that people get hit with these types of conditions, and I’m sure most of us can’t really appreciate what it’s like, but it’s good that you’re doing your homework on it.

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  2. Thanks CW. There is about 4 more parts to this technical paper. Since I could not get it published I figured I put it here to get a low amount of exposure. The main reason the article is not being published is discussed about in the discussion section (based on limited feedback). The reason's are tedious and shows me that our medical profession is nothing more than a bunch of egomaniacs. Since I do not have a medical degree many believe I cannot write an article for medical journal. But I tell them it is not a medical article, it is statistical analysis of a medical condition. Still I do not have PhD so it must not be any good.

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  3. Well it's THEIR loss, Patrick, because it looks like you have some useful information here. :)

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  4. Paul T Smith, Hull, England
    A brilliant article Patrick.i have suffered with BFS for 12 years now with all the neuro tests to eliminate the more sinister neurological diseases would like to show this to everyone who suffers from this condition and anyone who tries to understand BFS as it is impossible to understand the pain, discomfort ,exhaustion and social problems this condition can bring. Well done thanks.

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    Replies
    1. Paul, I am glad you enjoyed the article. I have no luck in trying to get it published. In any event, I am still collecting data and now have over 300 people in the survey. Hopefully in the next year or so I can republish the paper with the updated data. Thanks for stopping by.

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  5. Hi!

    I think I have this too. It started 8 months ago as some transient parathesias in my leg. It now has progressed to buzzing and twitching in various parts of my body though I do have my "hot spot areas" that they do seem to occur in more often in and then the "hot spots" change. How long have you had this? How are you coping? My MRI and EMG were normal. Nerve conduction study showed borderline peripheral neuropathy in both legs. I believe I may have some neuropathy but that it is unrelated to this condition. My neurologist sort of shrugged her shoulders when I mentioned these other things and thought I might be suffering from anxiety. She never mentioned BFS. I just read by accident this website as well as others and this diagnosis fits me to a tee. I am 44 years old. I have had so much anxiety over trying to figure out what's wrong with me only to be told it's only anxiety. I do have anxiety (now) but it's been because of the symptoms not the cause of them.

    I'd love to correspond with others who have had this for awhile so that I might know what to expect. I'm guessing I'll have this forever? I'm just hoping it's not progressive. It seems to fluctuate with better and worse days. I've lad a lot of "worse days" lately. I'm not in any pain other than psychological. I was so used to being in such good health and I have taken care of myself so this has come as quite a shock.

    PS Where is your poll? I'd love to take it.

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  6. I'm a software engineer and I think I may have this also, I have had various scans over the years and no conclusive answers, but your description of paresthesia evolving into twitches describes me, and my career has subjected me to an enormous amount of stress that I am ill equipped to deal with. The medical and academic community is totally broken, so let's start a database where people can self diagnose using statistics and deep self analysis, see each others MRI and talk with people other than a worthless MD. I'd love to see 10 people with identical symptoms as me and see their MRI

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  7. You can find the database and survey on my website. It is the same website outlined in the article:

    http://patrickbohan.elementfx.com/BFS.htm

    For the latest database and statistical update click on the Survey Data link under "161 Participants" section. This file is actually updated to 352 participants except for the statistical significance and correlation tab - I am waiting to get 384 participants after outliers - so I may need anywhere from 450 to 500 people. The participants are anonymous except for the fact they provide a 4 to 5 digit code in case I need to contact someone from the aboutBFS site.

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  8. Hello, I think I may have BFS as well. I am 44 yo, was/am in good physical condition and never had any problems with anxiety in my life other than the normal variety due to stress. Certainly never any panic attacks. I am in my 9th month of symptoms that started with trouble swallowing (dysphagia) in the late summer and then widespread twitching, buzzing sensations, RLS? (ticklish sensation), cramping in my hands, deep aching in my arms and legs, numbness and tingling in limbs, arms and legs falling asleep easily, exercise intolerance, head, facial and tongue numbness, tinnitus, ice cold extremities, temperature fluctuations, near fainting on standing (pre-syncope), I could go on. It seems I have neuro-muscular as well as autonomic nervous system dysfunction. Of course, the progressive and sinister nature of my symptoms created a ton of fear and anxiety and basically put my life on hold. I am seeing improvement but still have many symptoms and, as always, the twitching. There is always that fear in the back of my head that the worst will return and/or get worse or will turn out to be less than "benign". Great article and I applaud you for highlighting the very debilitating nature of this and related disorders. I am convinced they are not caused by anxiety.

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    1. Mark, thanks for your comments and sorry you have to go through all this BFS stuff. If you have been going through this for 8 months and have no atrophy then you do not have to fear the worse. I am glad you are seeing improvement. There is more to BFS then what medical professions know about.

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  9. Hi Patrick. Thank you so much for all the time and energy you have put into information on BFS. I was diagnosed with BSF last year and was told by the neurologist to 'relax more'. I was never really convinced though (perhaps due to his off-handedness) that I didn't have something more serious so have spent much of the last year questioning his diagnosis, which of course exacerbated my symptoms. I am so relieved to have stumbled on your site and to know that other people understand the frustration of this condition and of being told it's 'no big deal'. I have intermittently used lorazopam and zopiclone, but more to deal with anxiety of thinking I was misdiagnosed, and to cope with the fact that no one seemed to understand how taxing the symptoms can be. I'm feeling optimistic now that I can let go of that anxiety. Yoga and meditation have been particularly beneficial for me. In yoga terms, my particular body type (tall & thin) is prone to nervous disorders, anxiety and problems with sleeping, so the yoga I do is very slow and grounding. I'm also appreciative of your comment that you are happy for the BFS diagnosis as it could have been something far worse. Yes indeed! Best wishes to you. Sara

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    1. Hi Sara, thanks for sharing. It sounds like you have BFS - I do not think you were misdiagnosed. Without atrophy, what you have is benign. I have tried yoga and think it and exercise of any kind is beneficial to help deal with BFS.

      Stress is a leading cause for BFS and it certainly can exasperate symptoms. So the more we can control our stress level the better off we are. Hopefully, having seen this article it will help you relax more and hopefully mitigate your symptoms. Best of luck to you and do not hesitate to write if you have any questions or concerns.

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  10. I quite enjoyed your article. I'm 20 years old, twitching 6 years now non-stop. It has recently spread in great frequency to my eyes, my least favorite spot to twitch, so I've been reading up online more than usual...still no solution. Fighting to live another day.

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  11. Gibbard, keep up the fight. I will try to update this article once I redo the data in the next few months.

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  12. How do I find the rest of the article?

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    1. Hi Rhonda, you may want to do a search on my name Patrick Bohan and BFS. You can find lots of articles and links to my web site. Hope that helps.

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  13. Can a tight muscle for 3 days occur with this? After a long drive my right calf muscle was tight and hard for almost 3 days, like a permanent cramp. Have you experienced this or know if it can be part of it? Thanks. Linda

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    1. Hi Linda, definitely. Driving in a car can be hard on the muscles. I have had cramps / tightness last for weeks.

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