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

Posted by bigtwitcher1979 @bigtwitcher1979, May 26 7:52pm

I have been diagnosed with BFS for almost 2 years. I have pretty severe symptoms 24/7 365. I've had a clear EMG and been told by two different neurologists that it’s not ALS. I however have extreme health anxiety and can’t stop the intrusive thoughts. I'm searching for mental health help. My insurance won't allow for me to go to a professional. I need help! Maybe talking about it here is a start.

Interested in more discussions like this? Go to the Mental Health Support Group.

celia16 | @celia16 | May 26 9:31pm

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.

Cheryl, Volunteer Mentor | @cehunt57 | May 27 2:43pm

@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.

celia16 | @celia16 | May 27 3:50pm

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.