BFS diagnosis - still fearful

[ChickP]

The base of my left thumb began twitching two weeks ago this Thursday. When it hadn't stopped, after that weekend, I made an appointment with my PCP (last Friday). After a glance, my doc said, "What did you think you had, MS?" I said, "No, I thought it was the onset of Parkinson's." My doc diagnosed the twitching as BFS. I told my doc that I'd also made an appointment to see a neurologist; he agreed that it would be a good idea (more so to put my mind at ease). This past Monday, I saw the neurologist (NYU Medical Center).

After running me through the requisite "walk a line, tongue extension, fold your arms & close your eyes and strength tests" he diagnosed my twitches as BFS. He didn't say anything about scheduling an EMG so I'm guessing he didn't think it was necessary. The neuro also wrote me a 30 day script for .5mg Clonezapm  (I've had a moderate anxiety disorder for going on 11 years). But now I'm driving myself nuts with thoughts of ALS sneaking up on me even though the neuro told me that 99.9% of the time BFS sufferers have nothing to worry about (unless I start experiencing muscle weakness/atrophy).

This morning, my left forearm started bubbling; then my left kneecap; then the back of my left thigh; my right forearm also has a slight twitch. Great. Now it looks like I've got a long "waiting for the shoe to drop" life ahead of me. How do I get through this?

[lkakes]

Hi Chick P,
I had all of the same things as you, my facics are all over my body as well with a diagnosis of BFS.  I , like you did not have an EMG.  Doc said not necessary.  Did your doc say whether or not your reflexes were brisk?  

[ChickP]

I don't recall the neuro saying anything about my reflexes. I'm 5 weeks into this BFS stuff and feel like hell.

I hope you're feeling better.

[lkakes]

How old are you?  I am 28.  I was undergoing and obviously am still undergoing a tremendous amount of "medical related"anxiety that started back in April.  The fascics didn't start until June 8th.  They were really bad the first week and died down until this last week.  I started with the pins and needles things and burning and then the twitches got worse again..sold my house,got engaged, considering job change(alot of stress).  Do you sometimes get jerked awake at night? ps mine started on my scalp and then the thumb and then everywhere else imaginable. Keep in touch

[lkakes]

I see you are also on the same dose of Clonazepam as me.  I was told to start weaning off of it..was on .5 three times a day and now am down to half a pill in am and half a pill in pm.  So in addition to the stress that is when the fasics have gotten worse.  Also, have you looked at the website aboutbfs.org.  It is very informative.  You may want to join.

[ChickP]

I'm 57...and a card carrying member of the aboutbfs.org website.

I feel your pain (i.e. understand your stress). I stopped taking the Clonazepam a week after I started. The meds relieved the anxiety symptoms (somewhat) but I noticed I twitched a lot more when I skipped a dose. I quit smoking cigarettes "cold turkey" 16 years ago and I've decided to take the same course with this new BFS thing. Like many BFS sufferers I often battle negative misdiagnosed "fatal disease" thoughts. Like I said, I only started twitching 5 weeks ago. I'm counting on my PCP and neuro knowing what they're talking about i.e. fasics aren't anything to worry about unless there's weakness or atrophy. What else can you do other than seeking other opinions and one test after another.

[lkakes]

Glad to hear it.  I really prefer not to undergo anymore tests if  not necessary.  Did you have a virus or unusual amount of stress in your life when this crept up on you?

[ChickP]

I'm pretty anxious by nature so I'm sure stress has lots do with it.