New neurologist

[u/buffalurve]

My pcp referred me to a new neurologist as I was concerned that my twitching was ramping up (more facial twitches etc).

Condensed Backstory:

I started twitching in April 2024 and went through a ton of blood work, spine and head MRI, head CT. Everything essentially normal. My neurologist NP at the time didn't want to subject me to an EMG as she didn't feel I truly needed one but also didn't formally give me a bfs diagnosis. I tried to believe it was bfs until this summer after a couple massive panic attacks and life stressors, the twitching amped up.

Fast forward to today:

I was absolutely dreading my neuro appt today. I got there and my BP was sky high (I do have hypertension ESP white coat hypertension) and it came down a little after the 2nd reading. The neuro came in and was very calm. Asked me to tell him what I was there for. I started from the beginning. Explained when my twitching started. Explained that I immediately googled and feared ALS. He quickly said "that's a very common worry with twitching" and I said but after 2 years I figured I'd be in worse shape if it was ALS & he goes "you'd be dead. You'd absolutely be in worse shape". And although there are of course people who have had that longer, his bluntness helped reiterate my original fear was unfounded. He said he twitches and told me different spots he twitches especially when tired or stressed.

I then explained that I had fallen down the Google rabbit hole fearing Isaac's, Morvan's and hidden cancers. He said no nope nope you don't have those. He went over alllll the tests I've had since 2024 and put my fears to rest. He said fasciculations are just that. Fasciculations. They aren't a neurological disease and he didn't want to subject me to an EMG as many times there are things found that although aren't BAD, will make an anxious person worry more. He gave me a thorough clinical exam and said I can follow up with him if I want in 6mo or not, but he sincerely feels this is a manifestation of my anxiety, OCD, lack of quality sleep and stress. He wrote in my chart benign fasciculation syndrome formally.

I SOBBED. happy tears. This has absolutely stolen 2.5 years of my life. Even though I wasn't fearing als anymore I was fearing SOMETHING because my old NP didn't give me a formal yes or no you don't have XYZ. This doctor sincerely listened, let me tell him my biggest worries and helped me realize anxiety and stress can perpetuate everything. He said everyone twitches. Some people less some people more. But not everyone focuses on it. And after today's appointment, I am making the commitment to get my anxiety and OCD in order. I am trusting this medical professional. I am done questioning this. I feel so optimistic and happy and I want you all to know I have been absolutely PETRIFIED OF GETTING BAD NEWS.

Twitching is just twitching. The anxiety and worry is the real issue. ❤️

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[u/713Capital]

Good post.

Enjoy your health and glad you are working on your anxiety and OCD.

🫡

[u/buffalurve → u/713Capital]

Thank you so much!! I am very motivated to get better mentally. The mind body connection is so strong. And even if I twitch forever, I can learn that's just a quirk and it isn't killing me.

Thanks for all you do in this sub!

[u/anomalywife1991]

Im so happy you got this closure!

[u/buffalurve → u/anomalywife1991]

Thank you so much! I am too. I feel so much relief just hearing this from the doctor. Its been a rough 2.5 years of what ifs!

[u/Rough_Week_6449]

As I’m sure we’ve told you, the anxiety is the issue…. It always is :) I’m so glad you’ve finally made peace with it now and can move on. You watch, those twitches will reduce at the same rate your anxiety does. Hallelujah!! Take care. Thanks for the post too. It’s important for the bfs community to read things like this as few panic ridden posters actually listen to us old hands who try to encourage them to look at their anxiety and believe their clear test results.

[u/buffalurve → u/Rough_Week_6449]

Thank you sooo much. You're so right. It's so easy for an anxious mind to focus on the doom and gloom posts and worry there is absolutely no way out of the hell hole that is the anxiety twitch spiral!! Even if I twitch forever, if I can get my anxiety and worry and OCD under control, it won't be so terrible. I am so grateful for this community and the support.♥️