A Story about Twitching, Anxiety, and ALS Fears — Please Read

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New member
May 25, 2019
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I’ve been poking around this board for a couple months, and I wanted to tell my story in hopes that it may help others. Before I get there, I do want to say that the thoughtful responses of people on this board suffering from a horrible illness are truly incredible. You people are the personification of kindness and grace.

Now to my story, I’ll try not to be too long-winded, but here we go. In November of last year, I noticed that my right foot was twitching nearly constantly. It was almost like a pulling sensation in the arch of my foot that was so powerful that it made my toe move. It was annoying, but I stayed off the internet and tried to put it out of my mind. My wife was pregnant with our second child, and I was going through some changes at work, so I chalked it up to stress. The twitching continued nearly constantly for 3-4 months and then suddenly stopped, and I put it all out of my mind.

A few weeks later, my quad muscle on the inside of my right knee started to twitch aggressively and constantly. The twitches were visible to the human eye and extremely bothersome. At this point I remembered the issues I had with my foot. I should note at this point that anxiety runs in my family, but I always thought myself to not be affected by it. I’ve had medical tests in the past for minor issues, but I never considered myself to have health anxiety. The knee twitching kept going, so I started to look online for causes of twitches like I was experiencing, and I’m sure you all know what I found. ALS may cause twitches that are typically focuses in one area of the body. They can start in a foot or hand and then progress up the limb. This sounded so familiar! I sent a note to my primary care physician who said it wouldn’t hurt for me to see a neurologist.

At this point roughly 7 months after the twitching started, I was worried that something may be amiss, but I wasn’t fully consumed with the idea that it may be ALS. I went to my neurology appointment, and the doctor performed a number of strength and reflex tests. He also watched my twitches on my leg. His ultimate diagnosis was BFS since I didn’t have any clinical weakness or muscle wasting. He noted that it is extremely rare for twitching to present as the first symptom of ALS. Even if it was the first symptom, a doctor would be able to identify other issues during the examination. I left the appointment feeling slightly better, but this is really when most of my issues started.

I dove back into these lovely ALS forums as well as aboutbfs.com and read everything I could find. I read many articles on ALS written by irresponsible websites (I’m looking at your healthline) who casually make the connection between ALS and twitching. I became more and more anxious the more I read. Over the next couple days, my twitches spread all over my body. My right leg was still the focal point of the most constant and aggressive twitches (foot, calf, quad), but the twitches jumped to my other leg, abdomen, chest, arms, lips, upper/lower eyelid, the bag under my eyelid, above my ears, and just about everywhere else you could imagine. Multiple body parts started twitching at one time, and it completely freaked me out. How could it be normal to be twitching so aggressively and frequently and for it to be completely benign?

As my anxiety grew, I began to lose my appetite and to become unable to sleep. I was picturing the absolute worst case scenario in being ripped away from my wife and two children under 3 years old. I was imagining them having to grow up without me. I was imagining taping goodbye messages for them that they would watch when they are older. As you can tell, my anxiety was spiraling, and it was controlling my life in horrible, horrible ways. Unsure of what else to do, I made another appointment with a different neurologist to try to ease my concerns. At this point, the twitching was widespread and constant. The neurologist performed the same tests as the previous neurologist and made the same diagnosis of BFS. There were a couple different aspects of this appointment, though. First, she told me I had BFS prior to examining me. Once she examined me, she said she’d go grab another doctor just to confirm the diagnosis to make me feel better. She grabbed the other doctor who is a very respected neurologist in my city who said the same things as her, but he also offered me an EMG to reassure me. As I was leaving the appointment, I asked again if everything was normal, and she replied “Yes, completely normal except that you had somewhat brisk reflexes, but that can be normal for young, active people.” This statement crushed me. Now I didn’t only have twitching but I had brisk reflexes, two signs of ALS!

I spent a lot more time on forums in the next couple days. The soonest EMG I could find was 10 days away, and that period of waiting was one of the darkest periods of my life. I was nauseous every time I tried to eat, I couldn’t clear my mind to sleep, I was withdrawn from my family. I just wanted to have the test because I was sure it would lift all my fears and make me feel better. My hamstrings also became extremely tight. I tried to stretch them which seemed to make the problem worse. In hindsight, I realize that my anxiety manifested in my muscles as tight hamstrings which I then injured by overstretching them which only made the problem worse. I started calling other hospitals and luckily found an EMG that could be scheduled sooner. The EMG was comprehensive to say the least. The doctor tested at least 10 different sites in my arms and legs, and he came back and told me everything was absolutely normal. Fasciculations are extremely common, and I need to get it out of my mind that I have ALS. I was so relieved that I cried on the way out from pure happiness. Unfortunately this is not the end of the story, as has happened with many others as well. I went back to the forums. There were many people saying EMGs can be wrong, it is really up to the skill of the doctor to properly assess the EMG, they can be done too early, etc. I looked up the doctor who did my EMG and realized he was a physical therapist. In trying to get the appointment early, I ended up getting the test with a physical therapist instead of a neurologist. My anxiety peaked again. I figured I might as well go to the EMG I initially had scheduled since it is with an actual neurologist because they truly know best. Of course, the second EMG also ended up being completely normal.

I’m telling you all of this because this cycle seems to be one that many of us have fallen into. I don’t believe that anxiety is causing the initial round of twitches, but it seems to exacerbate the problem significantly. In my case, the twitches became significantly worse as I became more and more aware of them and as I read more and more online. I think it is important that people get checked by a neurologist if they are concerned of their symptoms. Once they are checked and cleared, however, it is essential to try to move on and to completely remove ourselves from this vicious cycle or it will consume us. The anxiety becomes worse than the twitches themselves, and it is truly harmful to our health.

The one thing I want to leave people with that I have used to calm myself down is the rarity of ALS, so let’s do some quick math. First, only 2 in 100,000 people get ALS. This is a 0.002% chance which is about the same chance you have of getting struck by lightning. Second, twitching only presents as the first symptom in about 5-10% of people diagnosed with ALS, but let’s be generous and say it’s actually 20%. This means your chance of being diagnosed with ALS upon noticing twitching as your first symptom is 0.0004% or a 1 in a 250,000 chance. Taking this a step further because many of you on this board are young like myself (I’m 30 years old). ALS is diagnosed in people from 40-75 most frequently. Evidence has shown that about 2% of people diagnosed are under 36 or above 85. Again, let’s be generous and say the number is actually 10%. This means that if you are under 36 years old, your chance of getting diagnosed with ALS with twitching as your first symptom is 0.00004%. Putting this into different terms: you have a 1 in 2,500,000 chance of getting ALS if you meet this criteria. Adding in some friendly comparisons, you have better odds of:

• Being killed by fireworks (1 in 340,000)
• Being dealt a royal flush in poker (1 in 650,000)
• Drowning in a bathtub (1 in 840,000)
• Dying in a plane crash (1 in 1,000,000)

A popular behavior therapist noted that his patient was suffering with health anxiety and was struggling to understand what those odds truly meant. She was convinced she has a disease that carried a 1 in 100,000 chance. He asked her to draw four tick marks (||||) with a slash across them (/), typically associated to mean 5. She had to repeat this process until a single sheet of paper was full. One piece of paper equaled roughly 1,000 ticks. The therapist copied this piece of paper 100 times and pasted them all on the wall. These papers took up multiple walls of his office. Once all the pieces of paper were on the wall, he asked the patient to take a red pen and change one single tick mark to red and to step back and observe the results. This provided a visual representation of that patient’s chance of getting the disease with which she was concerned. Now imagine doing that same exercise, but instead of copying the paper 100 times, you copied it 2,500 times. That means 2,500 pieces of paper with nothing but tick marks, and one single tick mark would be red. This is your chance of getting ALS if you are a twitcher under 35 like me. We must accept this and move on.

Apologies for the length of this post and rambling on and on, but I realized that this has controlled my life over the last 6 months and has had very real, negative consequences to my health and relationships. My hope is others will read this and it will help them to move on and to accept that BFS is a very real thing that many people have. It doesn’t point to something some sinister. The anxiety around BFS must be controlled or the disease and symptoms will control to spiral.
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