My story of BFS diagnosis and health anxiety

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kytwitcher

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Dec 10, 2023
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Learn about ALS
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Country
US
State
KY
City
Hopkinsville
Hello - 43 y/o healthy male.

I’ve got health anxiety. Have had it ever since an erosions diagnosis 14 years ago with a blood disease that I don’t have.

About 2 months ago, one day before my annual blood work for my annual physical I was having health anxiety. Dread of my physical. Often times I’ll get twitches when I’m suffering from work or health anxiety. But this time both calves started twitching and they wouldn’t stop.

I didn’t think much of it. Went and had my blood drawn, blood pressure was through the roof. LOL. That was a Wednesday. On Thursday I made the terrible mistake of “what causes muscle twitches in the calves”

I’m sure most of you here did exactly as I did. I convinced myself I had als. I lost hours and hours of sleep leading up to my physical. My calves twitched non stop for a week. Read this forum for hours.

I went to my physical and had warned my md of what I was dealing with. He knows me well and understood my mental state. He did a very thorough examination of me and said this

“You’re a very strong middle aged man with perfect reflexes and strong and flexible muscles. You do not have als. Common is common and rare is rare. Muscle twitches are very common. Especially for people who suffer from anxiety. ALs is very rare. Relax and stay off of the internet”

I went home and felt a huge sense of relief. As I was laying in bed that night, feeling like the weight of the world had been lifted off of me I notice that calves had stopped twitching. It was a weird feeling after a week of non stop twitching. But… within 10 minutes both started twitching again. I tried to block it, but I couldn’t.

My mind immediately started racing. And the hallmark of health anxiety, I started doubting my md. I was the rare case. He was wrong.

For the next 3 days I suffered terribly, finally demanding my md send me to the very well respected neurologist in our town. My md agreed to, but with one condition. That I seek therapy for health anxiety. I agreed.

It was two weeks before I could get into the neurologist. In the meantime I read the symptoms of health anxiety. (Look it up) and I fit nearly every symptom. I went to see a therapist in a practice that was highly recommended. I also had some events that helped Distract me. And I kept working out.

The twitches actually slowed down some and would stop for a few hours at a time. Usually returning at night and in the morning. When I would eat well they would go away. When I stopped with the worrying and was distracted they stopped

Then last Friday I went to my neurology appointment. I was terrified and the calves, eyelids etc… were twitching like crazy

For the next 30-45 minutes the neurologist worked me over. Reflex tests twice all over the body. Strength and flexibility tests all over the body. Very thorough.

He then told me all but the same thing my md said. “Rare is rare and common is common. You have BFS. You show absolutely no symptoms of als. Somebody your age and your strength would have twitches after acute physical symptoms. Not before. He told me to not waste my time with an emg”. He told me to continue with my therapy and to come
Back in 6 weeks for another exam to give me reassurance. He said that ever since the internet came about he has dozens of people every year who come in saying the same stuff I do and he has NEVER had somebody who had muscle twitches develop als if they didn’t have a reflex or strength issue at their first examination. He said that he’s had a couple who didn’t realize they had another symptom but never just twitches.

All that to say. If you’re like me and suffer from health anxiety, go get checked out. But when you hear the same thing I heard, get help for your health anxiety. I’m undergoing cognitive behavioral therapy and I’m two sessions in and am really excited about defeating my anxiety. You can beat the anxiety.
 
I’m back to update you on my therapy.

Cognitive behavioral therapy and mindfulness and breathing exercises have changed my life.

While I still get twitches from time to time I can tell you with certainty that if you go through CBT for health anxiety you can absolutely improve your symptoms and enjoy life even with bfs.

If you find yourself constantly checking for als symptoms, engaging in endless jnrrner searches, calling multiple doctors, get help with a therapist who understands cbt, mindfulness and how to treat health anxiety. You can defeat health anxiety.
 
Thank you for the update. Good for you for committing to recovery
 
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