Hello everyone, as promised, I’m writing to provide an update of my situation after my neurologist appointment, so that anyone who stumbles across this post in the future can find some relief from their anxiety. (I note from my original post that I did not provide my personal details: I’m a 49 year old Caucasian male.)
My initial question related to sudden onset of body-wide twitching, and whether in the moderators’ experience such twitching was a harbinger of ALS onset. Since my post, and prior to my appointment, my symptoms progressed from twitching primarily in my calves, legs and feet to the following:
- a feeling of having jelly-like legs
- dull aches in my forearms, wrists, and pain in the base of my palms
- a “funny” feeling when I used my hands, including an awkwardness with my thumbs
- a feeling like saliva was coming out of the corner of my mouth, although every time I wiped my mouth it was dry
- deep tremor like feelings in my abdomen and behind my lats,
- twitching and fasciculations that spread to almost every part of my body, including the area below my eye (not just my eyelid), which impacted my vision, and some of which were like little “pops” beneath my skin, some of which were like rolling muscle indents, some of which were like pings. At one point, my index finger twitched and almost hit my palm.
Does any of this sound familiar?
So this set the scene for my appointment with my neurologist. He checked my reflexes and strength, which were normal, and then asked me about my concern over the twitching. So I told him: I started twitching, which made me concerned so I googled possible causes, then I started freaking out, then I read some things on the Internet that calmed me down, then I read some things that didn’t, and basically I’ve spent the last four weeks vacillating between sheer terror and depressed resignation, walking around giving myself little strength and dexterity tests and asking people if I’m slurring my consonants.
The look on his face said it all. He said, “I really wish someone would change the search engine returns on twitching, because it’s caused a lot of my patients undue stress and anxiety.” Which made me feel better. Then he said he’s referred about one person a year to New York Columbia Presbyterian for diagnosis, which made me feel worse, considering I found some comfort in how rare this disease is supposed to be. I guess sensing my anxiety, he then gave me an EMG right there on the spot, poking me 10 or 11 times in both biceps, forearms, the underside of my arms, my palms, fingers and wrists. After he was done, he told me everything was perfectly normal.
Of course, that wasn’t good enough for me, as I had to elicit the exact testimony I needed (occupational hazard) to ease my anxiety, so I asked him: “just to be clear, do you see any evidence of denervation or innervation in those results?” He then said, “oh that’s right, you’ve been reading up on this. So let me be clear: I see no evidence of active or chronic denervation or innervation.” He also told me, “in most patients, we never discover the cause of the twitching, it just seems to come and go. One day, it’ll go and won’t come back. But it’s not something to be concerned about in the absence of other things.”
So, I hope this is a help to anyone out there who may have experienced the same symptoms I did. I still don’t feel “normal”, but maybe it’s like the old saying: the only constant is change. Which brings me to the real reason I wanted to post an update:
All of us have a choice of whether to control our minds or not. Clearly, I have two paths before me: I can choose to trust in the education and training of a board certified neurologist who in his subjective opinion believes I did not exhibit clinical weakness or atrophy, and in his analysis of an objective diagnostic test concluded that I do not show any signs of denervation, or I can look up the specialist he mentioned at Columbia, make an appointment to see her, and go on and on and on until I give the better part of my life away to anxiety and worry.
Which is where I was headed, by the way. In the time between my last post and my neurologist appointment, I found myself checking back in on this site, 3, 4, 5 times a day. What was the latest post? Are the symptoms like mine? How did it turn out? I seemed to go up or down based upon my latest read.
Not only was this behavior unhealthy and compulsive, it was becoming dangerous. In fact, it reminded me of a Twilight Zone episode. It’s called “Nick of Time”. In it, a newlywed couple traveling through a small town stops at a diner and becomes entranced by a fortune-telling jukebox machine at their table. The couple becomes convinced that they can’t leave until the machine tells them they can go, out of fear that they will suffer a horrible death. Eventually, the couple musters up the strength to ignore the machine and leave, as another couple comes in and makes a bee-line for the table. At the end, as the camera pans out, we see the couple at the table, distressingly trying to get permission from the machine to leave, and we hear Rod Serling’s voice “two people permanently enslaved by the tyranny of fear and superstition. Facing the future with a kind of helpless dread, with two others facing the future with confidence, having escaped the darkest corner of the Twilight Zone.”
I hope that anyone who comes across this post and who may be suffering from fear and anxiety finds the courage to walk away, and to live life.
Finally, to Laurie, Nikki, Vincent, Karen and the other moderators: bless you all. I’m sorry for your pain, if I had one wish, it would be to take it away.
And now: Goodbye.