Who else has BFS and can’t stop thinking about ALS?

I developed multiple, body wide fasciculations right after my appointment was scheduled with the neurologist. The appointment was for a neuropathy evaluation. Before I could get there, I was convinced I had ALS, MS or Parkinsons. After blood work, MRI, EMG, etc. they confirmed I had none of those conditions. Most of my symptoms, including Bradykinesia left abruptly. I’m not sure if it was instrumental, but I started therapy and still see my therapist regularly. One of the primary things we focus on is my health anxiety.

How could health insurance deny mental health treatment? I’ve never heard of that. I hope you can find some resources to help you.

@bigtwitcher1979 welcome to Mayo Clinic Connect. Your handle caught my attention and I thought I might have something useful to offer. First I must admit that I don’t do acronyms well and I need some clarification.

BFS - ?
EMG - electro myography test ?
ALS - Lou Gehrig disease ?

When @celia16 responded at mentioned body wide fasciculations and Bradykinesia it reminded me of Tardive Dyskinesia (TD) which is a movement disorder. It is neurological involuntary movements (like twitching) frequently associated with the use of psychotropic medications. This may not be related to you at all but I thought it was worth mentioning since you posted this discussion in the Mental Health group. Could you bring this up for consideration with the provider who diagnosed your BFS or with one of the neurologists that ruled out ALS? You need a clear diagnosis if possible to pave the way to fight for the best treatment to meet your needs.

I think the BFS is Benign Fasciculation Syndrome. It’s a common condition to get from what I’ve read. I frequented sites for people who actually have ALS, when I suspected I had it, and they report weakness is much more prevalent than twitches. Of course, fasciculations can be so alarming that you want to solve the mystery.

Right along with you. It consumes me and like you, I have been told no ALS. My family doesn’t understand my feelings but I can say it has changed my life as I always wonder why and what’s next? My anxiety is off the charts and I have bugged my poor doctors to death. Lot’s of questions.
I am sorry this has happened to you.

If you had anything bad, it would have been obvious after 2 years of time. Bfs stinks, it plays with your mind and body but it is not harmful. It may change your lifestyle a bit but in general, it’s harmless. Just keep that in mind rather than the other stuff you suspect you may have.

What is bfs

Benign Fasciculation Syndrome. It is basically twitching anywhere on your body and at any time however it is benign. This means it is not harmful although many report cramping and some pain / soreness associated with it.
I myself twitch almost non stop in my legs and my thighs feel sore as a result. I have twitching in other areas of my body too but just not as frequent as my legs.
This is normal but there are folks that have this that have no soreness or pain, just twitching.
EMG testing is often used as well as other tests and examinations to determine what you may have or not have. My experience was EMG, MRI’s, extensive blood testing and even a CT scan. All came back normal so the neurologists defined it as BFS. It somewhat of a process of elimination.
I have been a mental wreck, I am not lying but have to learn to move on and accept I may have this for life. It could go away but at the same time, it may not. People have had it for years and for some, it goes away in months. No one knows why but anxiety doesn’t help it.
There is a chance that this could be a “long covid” reaction as many have reported that this is suspected for them. I had covid so it could be but really nothing I can do about it at this point.
I wish you well and just remember, most twitching is harmless so don’t go down the rabbit hole as I did of checking everything on line. It doesn’t help, trust me!

In my case, I had fasciculations mainly in my hands and forearms, although a few in the thigh region, for several years, on and off, about 15 years ago. I had MRI’s and EMG’s because of Grand Mal seizures, around that time! I was put on Depakote. Then, about 12 years ago, I started getting other symptoms, ( like limb stiffness, rigidity, constipation, taste and smell difficulties, slowness of movement, loss of balance, with several falls etc. ). So, after being examined and checked by an internal medicine doctor, and a neurologist, with further testing seven years ago, I was diagnosed with Parkinson’s Disease, and now take 9 Carbo/Levodopa pills a day. I have not had fasciculations, in the last 7 years. Each person is different, so the only way to be sure about whether fasciculation problems could be problematic is to, probably, consult with a neurologist, and/or movement disorder specialist. I remember when I was first having fasciculation problems, in my hands, and forearms, I was concerned that maybe I had A.L.S. Seeking professional neurological evaluation is the best policy, in my opinion. Good luck, and I hope your fasciculations remain benign, and ease up!

Thanks for your note.

I am convinced I have early Parkinson’s as my symptoms align pretty closely despite not being diagnosed as such. I too have a stiffness in my left forearm and my hands / fingers do shake a little when my hands are in different positions.

I hope you are doing ok. We just don’t know why things happen to us this way and I guess life is truly a mystery.