Twitcher with a Swallowing Problem

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ZH1110

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Hello:

Thank you, in advance, for taking the time to read my post. I wish you well, wherever and however you are. I’m a 33—near 34—year old who, 8-9 months ago, developed body-wide twitching. To my mind, it’s been a long and tortuous journey, one that this message board has probably had its share of, so I’ll try to be short & concise:

I have been fortunate to live a mostly uncomplicated, healthy life. I ran many years as a cross country runner and remain in jogging trim. No health history whatsoever. In February of this year, I first had trouble swallowing a mouthful of Cheez-Its. I couldn’t quite erp them down—I apologize for graphic detail, but I imagine everyone around here is accustomed to more graphic descriptions—and had to resort to guzzling down water and flexing my neck. That was my first tip-off that something was awry. What happened next is I developed a persistent twitch in 1 eyelid—then the twitches erupted all over my body, head to toe. I was terrified. One night, I awoke with what I believed to be a drop foot—my right foot was numb and I couldn’t dorsiflex it. This lasted about 5 minutes. I went to the ED (for the first time) where a CT scan was done and some blood work. Other than a mildly low potassium, I checked out fine. I was already worried I had ALS and had been reading about it obsessively.

2 weeks later, I made another trip to the ER, this time with gasping respiration—what might be termed sighing dyspnea in the medical literature, likely a result of intense anxiety. Again, things checked out pretty normal. Finally, through the help of a friend, I obtained a referral to Neurology.

My first neurologist looked me over from head to toe, checked my reflexes and strength, and told me I was fine. A week or 2 later I was in the ER again, this time with generalized weakness (especially in the legs) and an alarming delay in my swallow reflex. The neuro-hospitalist looked me over from head to toe, ordered an MRI of the brain and spine, and told me I likely had benign fasic. He ordered an EMG for good measure—that, too, came back normal. (The bulbar muscles weren’t tested.) My swallowing seemed to get back to normal. My twitching persisted—still generalized—but at a lower boil.

I went back to jogging. My exercise tolerance was, to my mind, obviously impaired, but I could still reel off several miles at an OK pace. For me, it was about a minute slower per mile than usual. In March, I caught a viral illness, perhaps a pneumonia (not Covid) associated with a cough and mild shortness of breath. I got over the illness but the shortness of breath persisted for weeks. It felt like I couldn’t get a full deep breath. It wasn’t as bad as the sighing dyspnea, but it didn’t go away. I checked my oxygen saturation regularly (I work in a clinic). Then the breathing got better.

Late in the summer, my jogging had slowed still further. I was running about 2 minutes slower per mile. My legs were never fresh. I knew exercise intolerance was a feature of benign fasic, so I took it in stride and hoped I would feel better. Finally, I went for a jog on a hot day, returned home, and felt extraordinarily weak, from head to toe. My heart rate leapt. I suffered a panic attack (I thought I was having a stroke). An ambulance whisked me to the ER, treated me for SVT and sent me home with a prescription for Ativan and potassium (my potassium was quite low at 2.7—something that remains unexplained). I promised my wife, whose worry and suffering I’m sure you can imagine, I would avoid caffeine—I drank 4-6 cups of coffee a day—and alcohol. I drink very occasionally but am affected powerfully by it. I had had some to drink the night before.

After a week of rest, I went back to jogging. My pace was a little better. I felt better. Then I caught Covid-19. The illness lasted about 2 weeks and was mild. Afterward, I went back to my usual business again and felt pretty well.

Then I got a clenching sensation in my anterior neck. The swallow delay—milder this time—came back. The twitching worsened. That’s where I am today: I have generalized twitching, most focused in the legs and neck, mild to moderate exercise intolerance, a few weird sensations here & there like a tugging sensation in my left heel, and a mild but distressing delay in my swallow reflex. I also have a little difficulty swallowing solids—it might take 2 swallows to get a dry bolus down—but not liquids.

3 weeks ago, I saw a different neuro, a young guy, who is persuaded that I have somatization syndrome or hypochondria. My exam was normal again. He referred me to Gastroenterology to evaluate my swallowing, with an appointment upcoming in a couple of weeks. I have no clinical weakness of which I’m aware. But whenever I have trouble with a swallow a worry blooms in the forefront of my mind.

I remain deeply puzzled by all of this. Over the course of the past 10 months, I have been convinced 4 or 5 times that I have ALS; most of the time, BFS seemed like the likelier diagnosis. I do not have a history of anxiety, except for this year. My neck symptoms—the swallowing in particular—alarms me. The twitching is consistent with BFS, but isn’t unheard of in ALS either. I’ve also had other weird symptoms: the dyspnea in the summer, perhaps a very prolonged result of a mild viral pneumonia, a tremor in my right thumb and hand that came and went over the course of 3 weeks, little eye saccades when reading, quick little involuntary gasps and “surprise” swallows. Other things. In the past 2 weeks, I’ve developed insomnia. I don’t yet have weakness that I am aware of. My speech is not slurred or nasal. I can whistle.

I’ve already gone on much too long. If you’ve read this far, thank you for your patience. With my swallowing trouble, ALS remains a concern for me. If I have the disease, I would like to know, not least so I can prepare letters for my young children. The worry I get is the worry that they won’t remember me.

Thank you.
 

lgelb

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With a clean EMG, low potassium, and exaggerated responses to/inconsistent consumption of caffeine/alcohol, there is no ALS story here, but certainly some things to work on, in their own right.

Some people find it more difficult to keep their potassium up than others, caffeine is a diuretic, as is alcohol, you can write this script. Difficulty in swallowing dry solids typically relates to GERD, allergies, or dry throat, all of which are treatable. Often a dry throat spray, nasal steroid and more regular hydration help.

Diet and sleep are also obviously keys to everything you mention. Assuming you still train, there may also be adjustments that you might consider.

Viruses, including COVID, can cause or exacerbate muscle weakness, and will typically be felt as whatever you last thought you had an issue with -- in your case, swallowing. Still, there is no harm in seeing an ENT to rule out a structural issue, if the gastro testing reveals any concerns.

It's easy to wave around labels like "somatization." That doesn't mean you're a hypochrondriac; it means your body responds sometimes counterproductively to stimuli, and often what helps is just listening more closely to what it's saying, and when.

Best,
Laurie
 

ZH1110

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Thank you for taking the time to reply. All of that is wise advice. When I review what's happened to me in the last year in a disinterested frame of mind, ALS doesn't match the progression of my symptoms. My mind is drawn back to it when I feel as though I can't initiate a swallow (some days worse than others), my throat gurgles (often), I have to take 2 or 3 swallows to wolf something down or a muscle in my neck twitches after I take a gulp; or when I feel weak & heavy, as I do today, in my legs; or the twitching is widespread and insistent, despite having quit caffeine and alcohol and dialed back the exercise. I'm perplexed. When I feel lousy, I worry. I'm feeling pretty lousy this week, which led me to write last night. As your read-first posts here describe, twitching with a swallowing complaint is not an unusual presentation on this message board. I'll simply have to take it a day at a time, make my follow up appointments and hope to feel better. Be well.
 
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