Benign fasciculation syndrome (BFS)

If u have had a brain MRI and nerve conduction studies that were normal its not als. Those would be abnormal. Weird, but I started taking a pinch of celtic salt by mouth once a day then drinking a glass of water after and it has tremendously reduced them. Celtic salt is mineral salt. Look it up . Starting to think its an electrolyte imbalance. And for you your colon holds alot of that, that the body needs and u just had a major surgery.

I also was very concerned that I had ALS. I have non stop fasciculations (twitching) in my legs and less frequent in other various spots. I already have a neurologist due to other problems so my PCP recommended seeing him. He did lots of tests and lab work and was unable to find the cause so he ordered extensive EMG testing which was just completed this past Tuesday. Yesterday he told me that I don't have ALS. This means that it is probably just BFS. What a relief!

Trust your doctor and don't worry. I know how stressful it is after going through this for several months.

I am suffering from benign fasciculation syndrome. Please advise me how can cure BFS

Hello @ramizuddin, Welcome to Connect. I'm not a doctor but from what I have read there is no cure for benign fasciculation syndrome (BFS) but there are different treatments that can help. Here's more information on the condition:

-- Benign Fasciculation Syndrome: Causes and Treatment:
https://www.verywellhealth.com/benign-fasciculation-syndromes-2488771
-- BFS Organization: https://benignfasciculationsyndrome.org/

Have you talked with a doctor about your benign fasciculation syndrome symptoms?

There is no cure or treatment. I find that the less I stress out about it the symptoms seem to be somewhat better (easier said than done). I have read that sometimes it goes away on its own, although it may take years. The worst for me is at night in bed when there are no distractions or when they make my calves cramp up. I am just glad that it is not a serious or life threatening condition.

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.

My has come back this week more like when they first started. I get pain in my legs at times too. Its seems when I do my peloton and I increase the resistance my pain is worse. Im going to schedule woth my neuro doc again and get a back MRI

Excellent summary.