It’s hard to find someone to advocate for you in the medical field. I have been to three neurologists with the same result – “It is no big deal” and “you just have to live with it”. In fact, the reaction of some doctors makes me feel selfish that I want to find some kind of symptoms relief because I am reminded there are people with much more serious ailments that need their attention. I agree and consider myself lucky, but for the amount I paid for these medical appointments, I should garner some attention and respect then a shrug of the shoulders. I just found a good neurologist in Colorado; his name is Teerin Liewluck (My fourth neurologist). He recently came from the Mayo Clinic in Minnesota to Colorado Medical School Anschutz Campus in Denver. Information on Teerin Liewluck can be found at the following link: http://www.ucdenver.edu/academics/colleges/medicalschool/departments/neurology/Faculty/Pages/liewluck.aspx. I would highly recommend Teerin to anyone who has BFS. He is personable, has a sense of humor, takes your disorder seriously, provides you with a plan to try to mitigate symptoms, and truly understands BFS and similar Peripheral Nerve Hyperexcitation syndromes better than anyone I have met before.
According to Teerin there are four types of Peripheral Nerve Hyperexcitation syndromes. The first is BFS and people with this should only have muscle twitches and experience no other type of muscle symptoms. This may explain the reaction most patients diagnosed with BFS get from doctors is it is “No big deal”. If I only had twitches than my syndrome would certainly be much easier to live with. If you experience other types of symptoms than it is more likely you have Cramp Fasciculation Syndrome (CFS), Isaac’s Syndrome, or Morvan’s Syndrome and these syndromes are listed in the order of their severity.
According to my data (a Google drive survey which can be found on my BFS website: http://patrickbohan.elementfx.com/BFS.htm), out of 475 people who have taken my survey to date I have the following findings:
- 390 people have been officially diagnosed with BFS
- The 475 people experience, on average, 7.6 of the 11 listed symptoms to some severity
- Only 3 of 475 people experience twitching as their only symptom
- Only 20 of the 475 people experience two or fewer symptoms