The horrible fear began when the phone on my upper level rang. The batteries were dead, and thus, the speaker function didn’t work, so I had to hold the receiver to my ear.
After the call, I immediately felt tingling in my pinky, fourth finger and part of my outer palm. This had happened before a number of times, and I had always attributed it to the ulnar nerve of the elbow. But for reasons only the heavens will ever know, this time the tingling made me think of ALS–amyotrophic lateral sclerosis–the incurable muscle-wasting disease where the motor neurons of the brain and spinal cord start dying, eventually rendering the victim unable to speak or swallow, and ultimately unable to breathe.
I just had to check the internet to see if tingling fingers were a symptom of ALS. I visited many ALS sites and all said the same thing: The three chief symptoms in the early stages were muscle weakness, muscle cramping and muscle twitching. Not one symptom list mentioned tingling. But I wasn’t 100 percent relieved.
The annoying tingling persisted. I did time-consuming searches on ulnar nerve entrapment. I fit the bill perfectly, and after a few days, was tired of all the obsessing and finally had to rid the ALS thoughts from my mind. What had gotten into me, for Pete’s sake- Obsessive thought disorder- Holding a phone to one’s ear for sustained periods was named as a trigger for ulnar nerve entrapment, so why couldn’t I relax and find peace?
Three days after that phone conversation, the tingling was hardly there and I was busy at my computer working. Pushing its way to the forefront of my mind was the growing awareness that the muscles in both my upper and lower legs were twitching quite notably–perhaps 3-5 twitches per minute. This was going on in my calves, thighs, hamstrings and the arches of my feet.
I stopped my work. My muscles are twitching. Have I experienced this before- ALS! I certainly had not forgotten that muscle twitching was one of the three main symptoms of what is one of the most dreadful diseases in medical literature. A whole chorus of twitching was taking place in my lower extremities, and I was positive I had never experienced this before.
I googled muscle twitching to learn of its causes. The muscle twitching sites listed many causes, and at the end of every list was neurodegenerative diseases, of which ALS is one. One cause was inadequate calcium and magnesium–I had run out of my cal-mag tablets several days prior. Another cause was dehydration–I wasn’t drinking as much water as I should. The day prior I had also gone on a grueling two-hour power hike that included some jogging. Maybe that’s why I was twitching. But I had gone on many, many grueling hikes. I revisited ALS sites. All they said “muscle twitching” or “twitching muscles.” No other details.
A top cause of muscle twitching is anxiety. I kept telling myself it was general anxiety, and maybe residual anxiety from the finger tingling in combination with the hike had caused my muscle twitching. But had previous hikes ever caused this- I just couldn’t remember. This was getting ridiculous. And I swear; the more I let the panic set in, the more frequent became the twitching.
Extensive internet perusing taught me that non-pathological muscle twitching is medically known as benign fasciculation (BF) and the term benign fasciculation syndrome (BFS) kept popping up. It’s common, and can be triggered by anxiety or exercise, but especially anxiety. In the past, anxiety had caused me irregular heartbeats, grey hairs, hair “shedding” (per my hair stylist), and the occasional blemish. BFS anxiety can actually cause weakness–not an ALS kind of weakness, but the feeling of weakness we’ve all experienced at one time or another when under extreme stress.
Just when I thought I was finally getting over this unspeakable fear, I began feeling weakness in my right foot, an odd feeling of sorts. The knowledge that in ALS, weakness comes before twitching, was of no use. This set off a chain reaction of constant strength testing of my foot, because I needed constant affirmations that the strength in that foot was equal to the left one.
I did one-legged balancing drills on wobble boards at the gym, jumping drills, did all sorts of stair-climbing routines like walking up the steps backwards, sideways and walking down backwards by placing the last third of my foot on the step and seeing if I could hold it there (one-legged) for three seconds. I walked and ran backwards on a treadmill without holding on, sprinted forward on the treadmill, went on more strenuous hikes, ran downhill, you name it–always on the alert for the mildest incongruity or imbalance, or a detection of unprecedented weakness in that foot. None whatsoever.
And I’d be relieved after each rigorous workout. Unfortunately, the reassurance was good only for that day, and maybe the beginning of the next day. And then I was back to square one. The anxiety would return. I took to comparing the strength of my right toes to my left, after I began getting twitches in a few of my toes. I’d see how much pressure I could push down on my fingers with my toes, by placing my fingers beneath my toes.
One day I opened a bottle of vitamins and poured a few into my left hand, and one fell to the floor. Now, suddenly I was obsessed with ALS beginning in my left hand. I had an unopened box of garbage bags. The box was heavy and my hand barely large enough to grasp the box. I’d grasp it with my left hand to test finger strength. I could hold the box for only 5-10 seconds. But with the right, for 20-25 seconds. My heart pounded.
I had to repeatedly remind myself that my left grip had always been weaker than my right. Always. I had done gripping routines at the gym many times in the past, and that left hand just couldn’t match my right. But that was no consolation now. I spent 40 minutes testing finger strength with a 10 pound dumbbell. It took a week to get over this hand fear. But the foot fear still lingered.
Was there an end to any of this--a happy end that is- I decided that only time would cure me. If I had a neurodegenerative disease, I’d be struggling to climb stairs in 30 days. Or I’d have difficulty jogging or doing tasks around the house--for sure within 30 days. So I resigned myself to counting down the days, taking it one day at a time.
And before I knew it, 30 days from the onset of the perceived foot weakness had passed. But I was still obsessing about the horrible muscle-wasting disease, I told myself that for sure, another 30 days would do the trick. There was no way I could still be hiking or trail running or doing any of my lower extremity gym workouts, in the midst of a fatal disease, after 60 days. Really now, in ALS, two months is a long time for the disease to show its devastation.
After the two-month mark, I indeed felt as though I was getting a lot closer to feeling normal again. I realized I had fallen victim to cyberchondria: the syndrome of relentlessly reading medical websites in an attempt to self-diagnose one’s symptoms, but the more the individual conducts this kind of research, the more he or she becomes convinced that a potentially deadly disease is at hand.
The advent of the internet is responsible for this offshoot of hypochondria. In fact, I wonder if the internet hasn’t made hypochondriacs out of people who, before the invention of the world wide web never exhibited any signs of hypochondriasis, or if has triggered this agonizing disorder in younger people who’d otherwise never suffer any inkling of it.
During this episode my fear hounded me, and I was compelled to explore the internet for reassurance. I stumbled upon a medical website in which neurologists provided responses to questions from panicky laypeople. Page after page were questions from men and women who were scared out of their wits that they might ALS, because some part of their body recently began twitching. One man even claimed to bench press 500 pounds, and had posted his concerns several times over a period of time, unable to relinquish the obsession that he might be dying.
And here I had been, thinking I was the only one with the obsession. I couldn't believe so many other people were in my boat. For these people, just about every minute of every day was consumed in ALS fear. Ones who said they have small children were especially panic-stricken, believing that they’d never live to see their kids grow up…all because of some muscle twitching. Many of them had other symptoms, namely cramping, “buzzing,” and weakness.
In addition to the “neuros” responses, there was a posting board for viewers to share similar experiences or support, and every so often, they named a web site that was entirely devoted to benign fasciculation syndrome. I checked it out and began reading the forum.
My goodness, all these people out there thought they had ALS. Hoards of people were registered on the site, and the forum contained countless pages, dating back as far as 2002; this was the date that appeared on page 37 of a randomly selected forum index, but page 37 wasn’t the last page; the site only went 37 pages back. In short, a heck of a lot of people out there had the same condition I had--and even had it far worse.
This online community is large, and all have at one point or currently believe they might have ALS, even though the ones who have sought medical counsel have been told that they are just fine. New members were consumed in sheer terror, and begged for reassurance from veteran posters, asking them if anyone else ever had their same symptoms. So fearful are many members that they don’t even spell out A-L-S, but instead refer to it as *** or **S. Apparently, nobody in the history of this site has ever been diagnosed with this dreadful disease.
You do not need to have muscle twitching for a minimal length of time to officially have BFS. The difference between BFS and just benign fasciculation is that BF becomes BFS when the BF starts messing with your head, causing you to fear ALS so much, that you begin imagining that you have the other symptoms of ALS: muscle cramping, exercise intolerance, clumsiness, and muscle weakness. My warning is this: if you experience muscle twitching, stay away from the internet. Just take it for what it is: benign fasciculation.