Twitchy

If you’ve ever had a twitching eyelid, you know how annoying it can be. If it continues to flutter for many days or weeks, you know it can get downright frustrating. Imagine what it would be like to have your eyelid twitch for years, with no end in sight. Now, what if it wasn’t your eyelid twitching, but muscles all over your body? I don’t have to imagine that, because I’ve been living it.

Beginnings

One Saturday morning three years ago, I laced up my running shoes and headed out the door, ready to start my new training regimen. It had been a couple years since I had done any serious exercise, so I thought I’d take it easy that first day, take it slowly, maybe jog a mile or a mile and a half. The plan was to build up my endurance again over the course of a few months and then run a 5k race. When I was a kid, I was a fairly competitive runner, and in my early thirties I ran a few marathons, but I was fine with starting from scratch again. Sure, I was older and out of shape, but I knew if I had a goal and stuck to it, I would reach it eventually.

About a half mile into that first run, though, my calf muscles cramped. This new goal, I thought, was going to take longer than I had expected. A few days later, with the calves loosened up and my initial disappointment diminished, I tried again. This time, however, I only got two blocks away before the calves seized up. After a third attempt with the same result, I decided to get some help and started seeing a physical therapist twice weekly. I worked on building strength and flexibility in my lower legs, and within a few weeks the PT pronounced me good to go.

Twitch

It was around this time that I noticed something else in my legs. It wasn’t a soreness or cramping so much—although the cramping was still there to a lesser degree—but a twitching sensation. Like the cramping, the twitching was most noticeable in my calves. But the more I paid attention to it, the more I noticed it in other parts of my body, as well. Every so often I’d feel a poke in my shoulder, a prod in my abdomen, a flutter in my back. I’d sit down on the couch and put my legs up and feel little “pings” like someone was playing pinball through my muscle tissue. It made me concerned.

My leg and hand twitching (52 seconds)

So back to the doctor I went. We looked at diet, we considered sleep, we talked about medications, caffeine, stress, magnesium, potassium, and a bunch of other possible causes of my symptoms. Blood tests ruled out restless leg syndrome and a couple more serious possibilities which I can’t remember anymore. I was by then three months into the muscle twitching with no better idea of a diagnosis or a cause. To rule some things out I started stretching regularly. I cut out all caffeine intake, went off a couple medications, stopped drinking beer. I took magnesium supplements, potassium supplements, and fish oil. Nothing helped. Nothing made a difference.

Time to escalate

After running out of ideas, my primary care doctor referred me to Dr. Farooq, a neurologist in town. In the meantime, because it was coming up on a year since initial onset, I took the logical and always comforting step of consulting THE INTERNETS. It was there, in some dark corner of medical paranoia, that I discovered a diagnosis that fit my situation perfectly: Neuromyotonia. Then, in one of those rare moments when I actually don’t want someone to agree with me, the neurologist agreed with me. Actually, he said it was possible that it was neuromyotonia, but I’d need to go through more tests before he could say anything for sure: more blood work and an EMG. The EMG went as well as it could go, considering that it involved sticking needles into my muscles and sending electrical impulses through them. More importantly, the results showed no sign of neuromyotonia. The blood tests, on the other hand, revealed a problem.

Mistakes were made

No, sorry. The blood tests revealed two problems. The first was that my VGCC (Voltage-gated calcium channel antibodies, if you care) level was abnormal. The second was that the lab was supposed to test the potassium channel, not the calcium channel. It wouldn’t have been a big deal if I only had to go back and get more blood drawn. But the abnormal VGCC is a possible indicator of the scary-sounding Lambert-Eaton myasthenic syndrome and lung cancer, so I had to schedule a CAT scan, too. Things were getting interesting! The CAT scan revealed some ambiguous blobs and striations where they shouldn’t have been, which led to an MRI, which led to…an “all clear” from the doctor. No LEMS. No cancer. Nothing to worry about. And all the other tests? They came out just fine, too.

What was wrong with me, then? And could anything stop the twitching? Dr Farooq still didn’t have a diagnosis, but he’d seen other patients with similar symptoms who responded well to anti-convulsive medications, the kind typically given to those suffering from epilepsy. He prescribed one, and I tried it for a few months, but it did little more than make me sleepy. He prescribed another, but that one didn’t help either.

Back to school

I trusted Dr Farooq, and he seemed thorough enough during my visits, but when he recommended I see a colleague of his, a neuromuscular specialist at the University of Michigan, I was hopeful that the new guy would discover something that Dr Farooq hadn’t. The specialist gave me another EMG, ran me through a litany of questions and tested my vision, my reflexes, and my reaction to pin pricks. But the EMG showed nothing out of the ordinary, and the exam revealed nothing new. The best the specialist could do—and likely the best anyone could do—was give me a “diagnosis of exclusion,” which is exactly what he did. Benign Fasciculation Syndrome (BFS) is basically what you call my symptoms when they aren’t degenerative. It’s like saying, “yep, you have what we like to call twitchy muscles,” while giving the air-quote gesture.

What now?

Now that I have a diagnosis, I’m both frustrated and relieved, annoyed and grateful. For the past three years I’ve found myself flexing and stretching muscles, almost involuntarily, every hour of every day in an effort to stop them from twitching. Some nights the twitching keeps me awake, and it distracts me the most when I’m trying to relax. I just want it to stop.

And yet, as far as chronic physical conditions go, mine is quite mild. It’s not going to kill me, and it’s not going to significantly affect my life. When I consider all the many diseases and syndromes that my symptoms could could have indicated, Benign Fasciculation Syndrome has a comforting ring to it. In short, it could be a lot worse.

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3 Responses to Twitchy

  1. Joey says:

    This is so crazy that I found this, because I have been having similar issues for a similar time period. When mine first started, it came along with other symptoms, most notably fatigue. Any attempt to run would always result in cramping in my lower legs, most notably in the area of the soleus muscle, and almost always in my left leg, though sometimes both. No amount of stretching, rest, or hydration helped.

    I ended up getting blood tests, which revealed I had a pretty severe case of hypothyroidism. So now I take medication everyday to regulate my thyroid.
    But the lower leg twitches and chronic tightness still come and go from day to day. I’d love to get back out and run, but it’s like I already know what’s coming. I’ve resorted to going for walks to try and get exercise, but even after long walks, it’s like someone is sending tiny little shocks all over my legs for about 20 minutes afterward.

    I am almost always having to do self-message on my lower legs to keep the tightness and twitchiness at bay.

    Sorry for the long explanation, but I couldn’t help but read this and think, holy crap, this is exactly what’s been going on with me too.

  2. Karl Swedberg says:

    Hi Joey,

    No apology necessary at all. I really appreciate your posting a comment. It’s both comforting and sad to hear that you’re experiencing what sounds like the same thing as I am. I’m glad to know I’m not the only one, but I hate the thought of someone else having to deal with this. One thing that made me feel less anxious about the symptoms was the neuromuscular specialist telling me that if my physical condition wasn’t deteriorating by now—three years after onset—then I could be sure I don’t have one of the really nasty syndromes.

    By the way, after I gave up running, I joined a CrossFit gym. I found that the type of workout we do there doesn’t cramp up my calves the same way that plain running did. I’m in better shape than I’ve ever been in my life. So that’s at least one good thing that has come out of this.

  3. Alba says:

    Just happened upon your blog while searching a usage question. Felt compelled to read on. Noted your medical history and meaningless diagnosis. I had a meaningless diagnosis too, until I stepped outside of traditional western medicine. Now my meaningless diagnosis (irritable bowel) only applies when I eat something I shouldn’t—gluten and dairy, the former mainstays of my diet. I suggest finding someone who practices biological medicine, Chinese medicine, or other approaches—the key is finding a “healer” among them, rather than a “practitioner,” someone who can unravel the cause and find a solution. Best wishes.

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