This is the story of my experience with Benign Fasciculation Syndrome – a misunderstood and ignored neurological disorder involving muscle twitching (fasciculation), pain, fatigue, paresthesia, and cramping. [1,2] My story starts as far back as high school. During my participation in athletics, cramping was a chronic problem. Later, at age 40 following a climbing trip, I noticed paresthesia symptoms in my hands and feet and continuous twitching in my lower legs. My initial thought was it was caused by a neck injury from carrying heavy loads. An MRI on my neck revealed that my disks were not in great shape, but not bad enough to warrant surgery. The doctor did not think my neck was causing my paresthesia symptoms, but had no recommendations other than drinking lots of water to keep my disks hydrated.
Following a move to Colorado four years later, my symptoms got worse. After doing research on muscle twitching, I feared the worst. I could have ALS or MS. I had several visits to my doctor, who asked for blood tests which subsequently came back normal. Mineral and vitamin supplements failed to alleviate the symptoms. My doctor referred me to two neurologists – one to conduct an EMG and the other to do a complete neurological exam, which included an MRI. The tests came back negative and I was officially diagnosed with BFS by both neurologists. A year later I saw a third neurologist because my symptoms continued to get worse and I became more exercise intolerant. This neurologist spent less than 10 minutes with me and concurred with the other neurologists’ diagnosis that this was BFS. All three neurologists agreed that BFS is “no big deal” since everyone gets fasciculations from time to time.
Over the course of the next year I found myself continually complaining about my BFS. I have always lived by the philosophy that complaining without offering solutions is never acceptable. Hence, I decided to use my engineering background to collect survey data in an attempt to find a correlation between BFS symptoms, triggers, body areas affected, and remedies. I conducted research on BFS, and put together an online survey utilizing support-group websites and social networking. My initial goal was to help other BFS sufferers by showing that others are not only going through the same ordeal, but have similar symptoms, body areas affected, and address whether potential remedies alleviate BFS symptoms. My second goal was to bring more attention to the disorder and disprove the idea that BFS is no big deal by doing a complete statistical analysis of the syndromes’ intensity and frequency.
From the data I gathered and the statistics I ran, I have not only been able to statistically define the disorder, but have been able to identify nine unique forms of BFS based on potential causes and triggers inducing its symptoms. These forms of BFS fall under the categories of what triggered BFS symptoms: Stress, Exercise, Illness, Prescription Drugs, Vaccine, Chemical, History, Spine Injury, and Other. [1,2] Considering this uniqueness in what is an umbrella diagnosis, it is no surprise that it is difficult to find one cure or solution to alleviate symptoms. I believe that BFS takes on a more unique form with its symptoms, intensity, and frequency. In my case, there may have been a multitude of triggers including exercise, family history, childhood illness, prescription drugs, stress, and other factors such as alcohol abuse in the past.
I feel that by uncovering the mysteries of BFS, progress can be made in finding the cure for more serious neurological diseases including MS, ALS, and Parkinson’s disease, since early stage symptoms overlap. In medicine, benign is defined as “of no danger to health; not recurrent or progressive; not malignant.” While this disorder is considered “benign” it contains symptoms that are very real and in many cases both psychologically and physically debilitating (Kincaid JC, Muscle Pain, Fatigue, and Fasciculations, Neurology Clinic 1997). Perhaps a more appropriate label is Progressive Fasciculation Disorder (PFD) when symptoms are triggered by anything other than stress. Most importantly, no doctor should tell a BFS sufferer what they have is “no big deal” given the physical and emotional stress this disorder generates. Doctors know little about this disorder. Compassion, research, and follow up with potential remedies are more appropriate actions. Fasciculations in themselves are harmless, but when coupled with chronic symptoms, BFS can wreak havoc on a person’s life. By sharing this chronicle of my experience with BFS, I hope that awareness will be brought to the disorder, and that medical researchers may note that BFS is not an accurate descriptor but a disorder that can also have a chronic and progressive nature. This may facilitate effective remedies or a cure for those suffering from BFS.
Survey and data analysis can be found at: http://patrickbohan.elementfx.com/BFS.htm.
1 Newsom-Davis J, Buckley C, Hart I, et al. Autoimmune Disorders of Neuronal Potassium Channels, Annals of the New York Academy of Science 2003; Vol:998, p202-10.
2 Blexrud MD, Dr. Windebank AJ, Daube JR, Long Term Follow-up of 121 Patients with Benign Fasciculations; Annals of Neurology 1993; Vol:34(4),p622-5.