Scared its ALS (sic)

The EMGs were done in my arms because I was having pain, numbness, tingling, etc in them for months with nothing in the legs at the time. They were done 29 March 07 and again in 09 October 07. Both were completely normal. They did not perform and EMG on my legs. However, to answer your question (maybe) “was there any hint of spontaneous activity?” if you mean the twitching, the twitching is visible on the surface. I don’t know if that qualifies for a response since it’s not an EMG.

Concerning the CPK levels, I do not believe that it has been tested because the only blood tests that were performed were the initial basic slate of tests that my PCP requested in February 07. He also requested basic blood screening in June as well, both of which were completely normal.

I've seen a physiatrist, a neurologist, a physical therapist, an ENT, 3 GPs, had a brain MRI for MS, cervical MRI, lumbar MRI, blood work, stool test, urinalysis, western blot Lyme, multiple EMGs, x-rays, CT-scans of sinuses, wisdom teeth pulled, a colonoscopy, a root canal retreated, took up exercise, lost weight, tried a new bed position, took allergy medicine, got the best ergonomic chair money can buy, got glasses, stopped cracking my neck, tried sleeping on my side, my back, my stomach, took two vacations, and I eat more healthy than the average American. I'm certainly forgetting more things and tests I've gone through. Still, no one can tell me what's wrong. Every single test I get is 100% normal.

ALS expert1 responds

Assuming there is no weakness or other abnormal signs on neurological examination and that an EMG performed on muscles that you are experiencing symptoms in at the time is normal then the diagnosis is "benign fasciculation syndrome" or BFS. As the name would imply this is nothing to worry about and is often stress-related. This is related to what some neurologists like to describe as "low-threshold syndrome".

To explain this, I would ask you to concentrate hard on a sound far away from you. When you have done this think to yourself whether this sound seems louder / more noticeable now than it did before you made the effort to concentrate on it.

So much information is flooding our senses all the time that our brains our wired to "filter-out" anything that is not important. Now, as soon as you get a symptom and the thought crosses your mind that "this is a sign of something bad" then the natural response is to "listen closely" to the symptom to check it is really there and to assess whether it is getting worse......which of course it will as now your brain has marked this sensation as "important".

Now that the symptom is not just there but also getting worse then what do you do.....pay even more attention to it!...etc etc. So clearly the thing to do is to break the vicious cycle of symptom ---> worry--->attention to symptom----->worsening symptom---->more worry.

This is often achieved when a doctor has excluded anything worrisome by examination (and occasionally tests) and reassures the patient that all is OK. I am sure that if you were less scared its ALS your symptoms would improve.

Below is a personal account by a doctor suffering from BFS published in Annals of internal Medicine. This article relates to being scared its ALS and is indexed in the medical journal index site (PubMed) here:-

Looking forward to hearing from you,

All the best,

ALS expert1

My Not-So-Near-Death Experience
(Hill LN MD)

Ann Intern Med. 1996 Nov 15;125(10):855-7.

I am a hypochondriac. My medical degree offers me no immunity to this common ailment. My case is not a bad one, but I have it nonetheless. As a practicing oncologist for nearly 20 years before taking a generalist's job with the government, I empathized with my patients and became convinced regularly that I, too, had a malignant condition. Once I went so far as to walk into the reading room of my good friend, the local radiologist, and admit that I thought I might have male breast cancer, metastatic to bone, because I had discomfort in both the breast and the anterior knee. The knee films were negative, and the symptoms immediately resolved.

This time it was different. About a year ago, the fasciculations started. At first they were mainly in my calves and occurred after tennis or similar vigorous activity. At this stage, I passed them off as insignificant. But soon they began to spread, first up my legs, then into my torso and my arms, and finally to my face. Night and day, at rest and after exercise, they were there. Thirty seconds rarely elapsed without a twitch somewhere.

Oncologists don't often see amyotrophic lateral sclerosis (ALS), but the memories gleaned in medical school of twitching, bedridden patients with tracheostomies were still vivid. Incurable. Untreatable. Invariably fatal. I remembered those words and phrases, but I certainly did not recall reading of any recent positive developments. I became more than a bit frightened. Previously, my thoughts of impending death had never lasted for more than a few hours, but these persisted from days to weeks to months. I was able to function; I continued to see patients and dealt with them in a professional, competent, and caring manner. Between patients, however, my thoughts turned to my own body as well as to my family and friends, who I might soon be forced to leave. I thought a lot about the physicist Steven Hawkings and figured that if I were lucky, I, too, could live a long time in a wheelchair with at least the use of a single finger. I wondered whether I could afford the special computer that allows Hawking to translate his finger movements into written and audible words.

I was living in southern Asia when the fasciculations began. I had almost no access to the recent medical literature, and the country had no highly skilled neurologists. Even if it had, I was not about to go to a neurologist. As an oncologist, I always thought it best that pancreatic cancer be diagnosed after death. In my opinion, ALS is the neurological equivalent of pancreatic cancer. I was willing to sacrifice the distinct possibility of learning that I did not have this fatal illness to avoid the equally distinct possibility of learning that I did. The anxiety of not knowing was preferable to the despair of knowing the worst.

I did have an old copy of Brain's Neurology. As I recall, it said something like "most fasciculations are caused by motor neuron disease," but it also said that "rarely do the fasciculations precede weakness." I had not had any real weakness that I had noticed, but that made me decide to test myself. I hadn't done a push-up since my Army days in 1959. I did 15 the first day, and 1 more every day for about a month. I was no Olympian, but I did well enough. Using the rheumatologist's simple test of grip strength, I inflated the bag of the sphygmomanometer to 20 and squeezed it; I moved 300 mm Hg without trying too hard. Every day I repeated this exercise, sometimes a few times—the result was always 300. I was certainly not grossly weak. Wasting occurs with ALS, especially in the hands. I spent an inordinate amount of time examining my hands. I once saw a fold in the hypothenar eminence of the left hand that I hadn't remembered being there before. I returned to the squeeze bag: Still 300, but who knows, maybe, in my case, the wasting would precede my paralyzed slide into oblivion. I tested my reflexes, looking for the hyperreflexia that accompanies motor neuron disease. Perhaps that knee jerk was a bit brisk, I would think, and maybe those hand cramps that I get when I use chopsticks aren't meaningless after all. My anterior horn cells began to dominate my thought processes.

Two or 3 months later, my tour of duty in southern Asia was over; several weeks of home leave in California were to precede my resettlement to southeast Asia. Obviously, California has many neurologists, including some of my old friends. I had decided not to seek an appointment with any of them. Why, I asked myself, should I have an electromyography if my outcome will in no way be affected by the results? I had also had enough experience in my medium-sized community to remember the community's response when one of its physicians developed a life-threatening illness. I had seen medical confidentiality break down in this kind of situation as often as it was maintained. I did not want to be defined by my illness; I did not want to be known as Dr. Hill, Who Has ALS.

I did more push-ups and played lots of tennis; there was still no weakness 6 months later. I didn't have a pressure cuff, but I could still open the jelly jar when my wife couldn't. Even with these good signs, the twitching hadn't gotten any better; maybe it was a bit worse. I was pretty sure of the diagnosis. I became neither depressed nor angry. I became obsessed but, surprisingly, kept my obsession almost exclusively to myself.

Cal Ripken was about to surpass the record of Lou Gehrig. I was on a plane between Los Angeles and Washington, D.C., and the man next to me had a copy of USA Today. I saw a headline about Gehrig; the subheadline alluded to a new drug for the disease that he had made famous. The New England Journal of Medicine or Annals of Internal Medicine it wasn't, but I was prepared to read anything that might give me hope. Eventually, I mustered the courage to ask my neighbor if I could just borrow the sports section for a minute. The article disappointed me; it contained nothing of clinical significance.

My usually imperturbable wife, who is well aware of my hypochondriasis, had ignored my initial undramatic lamentations, but when she saw enough of the twitching she encouraged me, both for my benefit and her own, to talk to her brother-in-law, a neurosurgeon. We did so over a beer in his television room. There was no examination. I didn't even show him my muscles. "Probably benign," he said. I wanted to feel reassured. I did, but not very.

A week later, just before my departure for southeast Asia, my wife and I were on a golfing trip in San Diego. The game wasn't too bad; my drives, always short, weren't any shorter. At the end of a round, I was told that I had an urgent telephone call from the neurosurgeon. Thinking someone in the family had died, I nervously returned the call. He said, "I talked to a neurologist friend and he is concerned. He thinks you should come in for an exam and an EMG. And by the way, does your tongue fasciculate?" He informed me that tongue fasciculations tend to be a more specific indicator of motor neuron disease than fasciculations of the trunk or extremities.

"No thanks," I said to the examination. My reasoning had not changed. The results would in no way benefit me unless they were negative, and the consequences of a positive test result were more than I felt I could handle. I hadn't given any thought to my tongue in decades, but suddenly it was the central focus of my existence. I couldn't see any obvious fasciculations in the mirror, but maybe there was an occasional flicker. Once I saw an unmistakable twitch. I felt doomed.

Why go to Asia, I asked myself, when they will only have to send me back in a few months for custodial care? Then again, maybe I'll last longer than that. Plus, I had always wanted to see Manila, Hanoi, Phnom Penh, and the other great sights of southeast Asia. And maybe, just maybe, I didn't have ALS after all. That fervent hope of a benign conclusion to the entire matter was always central to my thinking. After all, all of those other illnesses I imagined had disappeared. I went to Asia. In my work during the previous 5 years, I had departed from the United States several times. The goodbyes this time were very different. I felt strongly that many of them would be ultimate farewells, but I said that to no one.

We have a better library here in Manila than we did at my last venue. It contains the 1989 edition of Adams and Victor's Principles of Neurology. Continuing my amateurish attempts at denial, I waited a couple of weeks before opening it. With all due respect to those fine authors, their index could be better. I read the section on ALS, which reinforced the idea that it is most unusual for the fasciculations to antedate the weakness. But unusual does not mean never. I returned to the push-up and squeeze bag ritual. I was no weaker. It wasn't until another fortnight went by that I opened the text again and looked under "fasciculations." There I found the statement, "A simple clinical rule is that fasciculations in relaxed muscle are never (my italics) indicative of motor system disease unless there is an associated weakness, atrophy or reflex change." My response to that simple sentence was like that of a wrongly convicted man when he hears that the governor has just reexamined the evidence and spared him the electric chair.

Since then I have learned that there is a not-uncommon syndrome of widespread, continuous fasciculations that may last for months or even years. It has been described in large part in health professionals, presumably because they know about the malignant potential of muscle twitching and seek medical care accordingly. The rest of the affected population, in its ignorant bliss, thinks that they just have some twitches, not enough of a problem to warrant paying for an office call. The last line in Adams and Victor's description of the syndrome is, "eventual recovery can be expected."

I have replayed the scenario of the past year over and over in my mind. Had I sought medical attention and had I had electromyography early on, I would have spared myself months of emotional distress. I might well have come across a sage neurologist who was fully aware of the syndrome and who could have reassured me even without the invasive test. But that would have been a gamble. On the losing side of that gamble would have been the knowledge that I had a disease that would inexorably take from me my means of movement, then my means of communication with those whom I loved, and then my life. I did not like the odds. I would probably make the same choice again today.

I'm still twitching. I don't squeeze the cuff anymore, and I've ceased doing the push-ups. I don't have Lou Gehrig disease. I am awaiting the next disorder that may cause my premature death.

Mark Responds (re scared its ALS)

Thank you for your reply re scared its ALS. It is somewhat comforting, especially the story.

However, as you are probably well aware, I'm still scared its ALS the anxiety of such a situation leads you to keep looking for an answer when no one says “This is what you have, 100% sure.” I am totally stressed out… so much so that I hardly realize it anymore. This is my new norm. I am so scared its ALS.

I did have a good three day stint last week where I didn’t think about it all and it seems I only had a few fasciculations (or didn’t notice them), but my legs are awfully tired. They feel like jello some days, like today, and they “vibrate” internally (my wife can’t see or feel it) when I lay down in bed.

The muscles are also sore, but I haven’t been exercising for a long time so I don’t know where the soreness comes from. The soreness is weird though. The muscles are not sore all day. Rather, they are sore for 10-30 minutes, then they feel fine again, and which muscle produces these symptoms keeps changing. One day I’ll squat halfway down to pick something up and my quad just above my knee will start twitching, so I think that muscle is getting weak, but then I’ll try to duplicate it and it won’t twitch again if I try 10 times. I also feel like I’m losing fat from my legs and my leg muscle tone is increasing, but I’m not losing any weight. I fluctuate all the time within the 226-232lb range (I keep track of my weight daily).

Like most, I guess I’m trying to rule out ALS somehow, but I can’t seem to find anything definitive and so I'm still scared its ALS. I certainly feel weaker than I used to feel, but I also spent February through July laying down all the time I wasn’t at my desk at work. I was terrified at that time of having something like MS (which now seems like nothing compared to ALS). I had been experiencing sharp pains, numbness, and tingling but my physiatrist and my chiropractor worked out that pain from trigger points I developed in my neck.

However, in August and September, out of pain, I only had the leg vibration thing. Come October and now November, I’ve got the twitching thing in the legs, 90% in the left, and then random twitches throughout the body. My wife had eye twitching for 1 week before I “got” mine. Then mine twitched for 2 weeks, then the legs started, and so on. The twitching also coincided with the tiredness in the legs.

Is there a way to distinguish tiredness from weakness? Maybe that would help me. Anyhow, as you can see I’m in need of more empirical evidence that I just suffer from anxiety-related symptoms (perhaps because I'm scared its ALS). Of all the docs I’ve seen, not a single one has suggested anxiety. They only say I don’t have “this” but they don’t know what I “have.”

ALS expert1 responds

(Re scared its ALS)

Thanks Mark,

As I myself have not examined you or seen the EMG results I have to work on the following assumptions:-

1)Your Neuro XM is normal

2)Your EMG is normal

If my assumptions are correct then according to the accepting criteria used to diagnose ALS I can say with 100% certainty that you do not need to be scared its ALS and your diagnosis is benign fasciculation syndrome.

Hope that helps,

ALS expert1 (re scared its ALS)

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Summary of scared its ALS:-

Twitching can cause one to be scared its ALS. When someone is scared its ALS they look closely for more symtoms making them even more scared its ALS and so on.Some rules of thumb if your scared its ALS....not to replace a visit to your neurologist of course!Scared its ALS? If there's no weakness you can relax.Scared its ALS? If the EMG and examination is normal you can relax.Scared its ALS? If it comes and goes you can relax.Scared its ALS? If it's not getting worse you can relax.Scared its ALS? If your symptoms haven't changed in 10 years you can relax.Scared its ALS? If your symptoms go away when you are not thinking about it you can relax.

(re scared its ALS by Mark)