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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 4 days ago | Replies (465)Comment receiving replies
Hello Fellow BFS suffers. I was diagnosed in 2018 and have been experiencing BFS throughout my life with varying symptoms. I'm 62 now, so I get an extra layer of aging which has now complicated figuring out relief to a diagnosis which has no cure or specific path of treatment. I was diagnosed with an EMG test and although my movements are not visible to the eye, I am feeling everyday as if I have run a marathon - the fatigue is unbearable. I have signed up to this group with the hope one day someone will report out or with any luck, I can share, a treatment plan. I have read all there is, everything in this thread, comments and links. I have been at this for several years now and the diagnoses has me on disability for the last 7 years and for the foreseeable future. However, let me echo some positive things which have help me - reducing stress is a must (but being diagnosed with a health issue which causes stress on the body is a tough adjustment), a low inflammation diet is what works best (aka diabetic diet, even if you are not), you have to move; so you have to some form of stretching, chair yoga, quite time (mediation) are all musts. But day to day survival for me is all about distractions - keeping your mind busy on something else puzzles, hobbies, shopping - keeping busy enough but not too busy to bring on an episode where I lying in the shopping center and they have call emergency services or you have crashed your car into the curb because your leg decide to crap up at an untimely time. Unfortunate for me, many of the drugs which helps, I am too sensitive to take and they either exacerbate my existing symptoms or cause unbearable new symptoms. However, I have landed on a muscle relaxer, nausea meds, headache and sleep aids - but the biggest thing I have to rely on is will power. And I can tell you, it wears out fast, so a little mental therapy is helpful to maintain my sanity. Fortunate for me, I have talked with Mayo, GERD and several health clinics and I supposedly have one of best in the business Neurologist for this disorder. I honestly believe I am getting the best treatment possible however it is difficult to hear others suffering as I do and virtually nothing can be done to curtail this diagnoses any better. The treatment plan of this diagnoses hasn't moved much since 1963. There seems to be more of a concern that it doesn't turn into Parkinson's or ALS, which I would argue, I wish it would as then I know I stand a better chance for a treatment plan. Again, I signed up as I am interested in tracking folks progress on treatment plans that are working for them which I might be able to add or try. Thank you for allowing me into the circle.
Replies to "Hello Fellow BFS suffers. I was diagnosed in 2018 and have been experiencing BFS throughout my..."
Hello. After several years of dealing with benign fasciculation syndrome, primarily in my forearms, but also, occasionally in my legs, I had an EEG test and other testing after a hard fall, where I face planted on a sidewalk, with blunt force trauma, and a concussion! I lived in a small town, at the time, where there were no neurological specialists. The fasciculations were irritating me, because I had read a Lou Gherig biography, and fasciculations were mentioned, as an early symptom, he had, resulting in eventually a diagnosis, of Amyotrophic Lateral Sclerosis, from the Mayo Clinic, after testing. After much testing at the local hospital, which included a Cat Scan of my brain, the EEG, heart ultrasound etc., the final diagnosis was inconclusive, by my family doctor, and his local colleagues, at the small local hospital. I was frustrated, and so was my daughter, a BSN medical professional! After another couple years, of more episodes, where my legs seemed to become stiff, at times, and my left arm and left leg were jerky like, when I moved them up and down, and still no clue from my Doctor, my daughter moved me from the small town, to a bigger city, with a regional hospital, and specialists! My daughter had me seen by an Internist, who saw my obvious rigidity symptoms, and occasional fasciculations, and the Internist told me that he thought I had Parkinson’s Disease! Right away, he told me you stay right here, and I am going to call the best neurologists office in town. So he called a movement disorders neurologist, who specialized in treating Parkinson’s Disease, and Parkinson’s disorders. An appointment was set up for me to be seen 2 days later. The esteemed neurologist examined me, and took a history, and stated that he thought that I was afflicted with Parkinson’s Disease, and after ruling out Parkinsonism, and my going through a trial run, of LevaDopa medicine, where my symptoms miraculously ( to me ), eased up somewhat, I was officially diagnosed with Parkinson’s Disease. This was approximately 8 years ago, and I was 70 years old, at the timr. I have been free, for the most part, of having fasciculations, in the last 8 years! Wishing you the best!
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Excellent summary.