Benign fasciculation syndrome (BFS)

Thank you, I appreciate you. I have to start with a gp here where I live. And it’s not even a gp but an arpn?... I’ve had an appt scheduled for feb 23. Saw the podiatrist today who says I really need surgery for Morton’s neuroma. I’m hesitant as I’ve read it’s not very successful and the neuroma can grow back.

That is great news that you have an appointment scheduled for 2/23 to address your concerns your twitches. Can I ask if the information shared in this discussion by other members, or that you've found in looking into your symptoms, has you thinking your GP will be considering Benign Fasciculation Syndrome as a potential diagnosis?

What would be helpful for members in the community to share with you ahead of that appointment? What is your main concern with regard to your twitching?

No, honestly I think I will be viewed as a middle aged woman who is anxious and I will be pacified by that. Where I live health care is really poor. I can only suggest to the nurse practitioner that I would like her to do some investigating, like routine blood tests, maybe an x ray of my back to see if a disc is causing a pinched nerve... I feel like I’ve gotten a handle on my anxiety so I’m hesitant to lump my twitching, tremors, jerks (whatever you want to call them) under the anxiety heading. All I know is I need answers. My main concern is it’s a symptom of a more serious disorder. If they can rule out MS,
ALS, and vascular disorders I’d be at peace with the twitches. Thankful I found this group. Just knowing I’m not the only one going through the agony of not knowing why these occur is comforting. Thanks again.

had that surgery years ago, Honestly nothing to worry about, foot has been fine ever since.Mine was removed while I watched in 1995 and NO it has not grown back, don't put up with it any longer. I promise its nothing to be concerned bout.

Thanks for chiming in. I’m so glad to hear of a success story with MN surgery.

Hi… I was in my 20s when I got a flu shot and within hours had jumping muscles all over. I went to the emergency room saw numerous doctors and eventually a neurologist. I went to him for a yearfor tests and an MRI and a CAT scan and it was determined I had BFS. In this case I should’ve googled!! My uncle has ALS and just assumed I had some dormant version of ALS that could be turned on at any time. I recently got Botox and it said do not get if you have ALS so I told her I think I have a benign version of ALS. She had never heard of BFS and said she would look into it. She said I can’t believe you haven’t looked into it to see what it is and that she was going to take the time to do it. I told her I didn’t want to know if I was dying. I also told her I could not get the Covid vax because I was afraid to after having that reaction from a flu shot. I think she really wanted to look into it because I really wanted to get the Covid vaccination and just figured I could not. She’s not gotten back to me but she was going to talk to her doctor as well she is a nurse practitioner. After I was told it was benign I never went back to a neurologist again I was too terrified to be told I was dying but after googling it for the first time after this Botox appointment a couple weeks ago I feel like I wasted the last 21 years of my life terrified for no reason. My 17-year-old son has known me only as incredibly anxious always think I’m dying mom. Tell your sons not to worry it’s an annoyance but it will be ok.

I had my appointment today with a new provider. She was horrible basically and it did not go well at all. She did agree to running lab work. She said she’s pretty certain I have restless leg syndrome, but I’m anything but sold on that diagnosis. She ordered CBC, thyroid vit b 12 vit d and lipids panel. She also cut me off my anxiety meds so this should be fun. Thanks all, I’ll keep you posted.

Hello @gregnsrae and welcome to Mayo Clinic Connect. Thank you for sharing your story. It sounds like you have been through a lot and have found some recent perspective on possibly seeking more information and foregoing your fears.

If you are comfortable sharing, do you think that you are at a place of taking action now that you recognize that your fear may have been for not?

Yep - i have had the neurotic female bit time after time by an arrogant male MD - even when the EMTs insisted on taking me by ambulance to ER due to high blood pressure and too high heart rate and extreme difficulty breathing. ER MD said it was just anxiety, shot me full of Ativan (which they won't let me take at home anymore due to pain meds) let me sleep for 2 hours, then put me in a cab in the middle of the night and sent me home alone.

I realize this is a couple years old, but I would not recommend starting Lyrica. It will help for the first month, then they will continue to up your dose bc it will stop working. Next thing you know, you’re maxed out and getting no relief. The real kicker and reason why I advise against it is because of the withdrawal symptoms and dangers of seizures, etc. from dropping off too quickly. It’s a nasty drug that most doctors are not fully educated on. Check out some support groups online and see how many people are permanently affected from stopping or weaning this drug too quickly. I also know from personal experience. It’s a nasty drug to get off of and some side effects are permanent if stopped abruptly. I wish I was never given this med.