Hey everybody. I am 31 years old and married and am an Iraq veteran (I say that last part because of potential increased risk of ALS in military veterans). I also have a history of health anxiety, and of this last week, have become convinced I am in the early stages of ALS. This panic is only a week old, but due to some of my symptoms, I can't help but shake the thought that my anxiety is deadly right this time.
Now, since it relates, I'll briefly recount my past health anxiety. 2 years ago after returning from my honeymoon, I got a really bad 24 hour stomach bug. I was dehydrated to the point of near organ failure and was rushed to the ER. For the next 4 months, I experienced a weird set of symptoms, weird chest sensations and crippling fatigue (which slowly improved with time). I was terrified I had some chronic form of myocarditis and had EKGs, cardiac enzyme tests, a stress test and echo, and Holtz heart recording monitor, and nothing ever showed even a single glitch. I eventually fully recovered.
After 2 years of being in good health, it happened again, though this time out of the blue. Weird chest sensation followed by weeks of bad fatigue that eventually got better. After having a full cardiac workup again showing no abnormalities, I feel like I have truly but the myocarditis fear to rest.
At this point, you are probably all wondering what this has to do with ALS? I'm getting there!
So anyway, I'm still on the recovery end of this last bout about 3 months later. I began searching for a new culprit, which led me to Chronic Fatigue Syndrome (CFS). CFS was not a good match because diagnosis officially requires 6 months of debilitating fatigue and 4 of a list of 8 symptoms. I was also noticing another problem, I seemed to have a slight feeling of weakness above both of my knee caps and my legs were easily fatigued by exercise (I train Jiu Jitsu).
My next step was fibromyalgia, but that didn't fit either, as I was not experiencing any pain. Next down the line was MS (at this point I'm starting to worry), but I have almost never had any feelings of tingling, pins and needles, or eye problems as is so common in MS. It was than that I discovered ALS, due to searching for muscle weakness, and was terrified just reading the description. I will say that initially, I didn't actually think it was ALS due to the fact that fatigue, and muscle weakness presenting simultaneously above both knee caps was not typical onset with what I was reading. When nothing else seemed to fit however, ALS continued to lurk at the back of my mind.
And than panic ensued. Last thursday, I was sitting at the computer self diagnosing eating strawberries, when I reached for a strawberry with my (non-dominant) left hand and dropped it on the way to my mouth. This was an ALS symptom... instant panic! I remember launching into a series of tests to match my grip and wrist strength, and even though I am able to unlock doors, turn keys, open jars, pick up thick books with my thumb and forefinger, and button shirts with either hand, I began to feel like my left arm was wanting to drop my phone when I held it a certain way and rotated my wrist. Same sensation when I rotated my wrist under my pillow while laying down.
About this time, I started noticing the first muscle twitches in my left forearm and left bicep (of course the affected arm!). This was ANOTHER ALS symptom, muscle fasciculations! Although the first ones were small and happened very infrequently in the arm, I started noticed much more frequent ones in my right quadricep and right calf muscle in the leg, that have eventually moved primarily to my left calf (affected side!) which is where they are primarily located right now. Over this past weekend I have begun to notice a lot more muscle twitching than ever before, primarily on my left side and primarily on my leg.
We went to the beach this weekend with friends and about this time, walking barefoot in the sand I seemed to notice that my achilles tendon felt "strange" in my left foot. This led to a battery of test for my left leg now, including standing on tip toes, standing on one leg, standing on one leg with tip toes, and jumping up stairs... all of which I'm able to do. However, I can't shake that sometimes my left arm and left leg feel like they want to "give out" on me when I do certain motions, and seem to feel weaker, even when at rest. I have also noticed that I'm stumbling over certain words and SWEAR that my speech is slurring slightly, even though my wife insists it isn't and gets mad at me for asking. I even had myself convinced I was having trouble swallowing, though I'm not sure if that is legit or purely subjective to be honest.
To make things worse, sunday night I started to notice a slight cramp feeling in my left calf (Another ALS SYMPTOM!) and maybe at times a very slight one in my right. I will admit that the cramp didn't seem to bother me during Jiu Jitsu last night, and seemed to almost completely go away last night after exercise when I was able to bring my anxiety to an all time low for the week (I actually got my appetite back for one meal!... I've lost nearly 5 lbs. in the last 2 weeks). However, I can feel the crampy feeling ever so slightly in my left leg again, and the fasciculations seem to have returned to their frequency again (thus fueling my anxiety this morning).
So... I should probably get to the primary worry questions, and hopefully you good folks can help address a few. I'm scheduled to see my Dr. a week from today, and will insist on a neuro visit, but I have to make it through the week first.
1. My biggest concern is the presence of fasciculations AND occasional cramps (in the calves only so far). This is what seems to nail it for me. People seem to experience fasciculations with anxiety, but not fasciculations AND slight cramps... on the suspect side to boot!
2. My other big concern is the nature of the fasciculations. Mine tend to be small and brief... I'm not even sure if they are visible or not since they usually happen out of sight. What has me worried is that supposedly it's the small, short, infrequent fasciculations that are a bigger worry than the big, obvious, clearly visible ones. I've experienced them on various areas of the body, ranging from good sized ones that last a few seconds to sometimes just tiny, single twinges, and even buzzing in my finger joints. They seem anchored on my left leg, but I feel them on my right leg, left forearm/bicep/tricep (less frequently) and very rarely on my left chest, left back, or right arm.
3. Is it normal for fasciculations in BFS to be concentrated on one side, and can these be directly caused by anxiety?
4. Can anxiety cause your speech to slur slightly, and cause you to catch yourself botching up some words, or give you the perception of difficulty swallowing?
5. Also, I'm still becoming quickly fatigued (than normal that is) in exercise, especially in both legs. Does this sound like a variant of an ALS symptom? I'm able to make it through an hour of going through technique, but not much more than that.
I'm hoping there are some other folks on here who have done a lot of ALS research, experienced some of the same things, and can help me survive until I get to my GP (and than the wait to get to a neuro). God bless and thanks!