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Author Topic: 31 y.o. male veteran very concerned about ALS  (Read 427 times)

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Offline mjd83

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31 y.o. male veteran very concerned about ALS
« on: May 06, 2014, 10:34:16 AM »
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!
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Offline Nk904

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #1 on: May 06, 2014, 11:53:13 AM »
This is not a path you want to go down. Weakness is first, always. Stop thinking about it. I drop things every day, big deal. I couldn't open a ham container the other day, big deal. I couldn't open a bottle of apple juice. Guess what? Ether could my brothers gf. It happens. Some stuff is just hard to open!
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Offline thenomnomnomicon

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #2 on: May 06, 2014, 12:45:55 PM »
Twitching only begins after very noticeable atrophy. I don't want to discourage you from seeing a neurologist, still, because I don't know exactly what you're experiencing. Cramping can be associated with BFS (if you haven't already read about BFS, you should). 92% of ALS cases happen after age 38 (or thereabouts). Occurrence is 1-2 in every 100,000. You have significantly less than a 0.1% chance of having ALS. Also, it almost always begins with drop-foot or extreme weakness in a hand. Multi-onset isn't impossible, but it's ridiculously unlikely. Like. Ridiculously. I've been going through something very similar. Approximately 3 weeks ago I had a clean EMG. This can all be caused by anxiety. I know it sounds absurd. Buzzing is not a symptom I'm aware of. Anxiety can cause speech impediments.

The guy who commented beneath me. He's a great guy to talk to about this.
I second his statement to stay off of ALS forums. Remember that even though some of them may suffer from ALS, it does not mean every person there is informed about the progression of the disease or its diagnosis.

Just to make the point, my mom believes homeopathic medicine is valid. You cannot take the average person's opinion on this over scientific documentation or your doctor's.
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Offline ShawnW

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #3 on: May 06, 2014, 12:55:16 PM »
First and foremost you are 31 yo, and in an unlikely group for ***.  Second, you have military experience and if you seen any combat may have some PTSD...which mingles with benign fasciculation syndrome and fibromyalgia in it's physical symptoms of presentation.

Cramping, fasiculations a perceived weakness are extremely common with benign fasciculation syndrome cramping subtype.  Look around for BFS forums and see hundreds of stories just like yours who were cleared of anything ominous.

Next slurring of speech being only heard by the person speaking is very common with anxiety.  Stumbling over words, words sounding odd etc.

I have had all the symptoms you complain about and more.  The jelly like feeling above the knees, the speech/swallowing issues, even had an arm that got very fatigued just shampooing my hair....twitching just about everywhere.

Nothing you said makes me think ***.  But, it does make me think PTSD and BFS.  With all of that said, getting a full neuro work up is indicated if not for anything but your sanity.  IMO, this might be one of the worst HA fears.

My advice say off of *** forums.  Find a forum for BFS...and read the stories....much scarier than yours and cleared of anything bad.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline Walnut

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #4 on: May 06, 2014, 01:00:09 PM »
Ive had many of the symptoms you describe. They have come and gone over the years. When my twitching started it was pretty localized for a long time then started moving all around. I dont have twitches like I used but they do occasionally come back. I have also had muscle cramps with twitches and also at times I get these mid cramps in my biceps and other places. By mild I mean its very tense like it is just about to cramp but not quite there yet. It seems to take a day or 2 before the muscle seems to relax.
I ve had all sorts of chest pains and sensations and al sorts of tests. Ive had debilitating fatigue that has lasted from days to weeks. The fatigue was so bad it made sleep feel like work.
I have been down that road where I feared MS, ALS, Parkinsons etc etc. I can tell you that the mind can produce some very strong symptoms. 
Id like for you to read this post on the forum: http://www.anxietyzone.com/index.php/topic,28715.0.html i think it will help you.
Also I would recommend you read on tension myositis syndrome by dr john sarno or dr howard schubiner. TMS covers many many symptoms that originate in the mind. I found great relief from many many symptoms with this. It isnt some quacks saying eat sawdust and fried flies and it will cure you. They give very detailed information, studies on how the brain can actually cause pain and other problems. unlearnyourpain.com is dr schubiners site.  they have books on amazon. i actually got one of dr sarnos books from the local library. Hope you feel better soon and relieved of these symptoms. Also, I would like to thank you for your service and protecting your fellow country men, women and children. YOu are a real hero.
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My screen name used to be "Nutty" Ive been a member since 2008. I forgot what email I used back then so I cant login to my old name.

Offline Dmcrae22

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #5 on: May 06, 2014, 05:04:31 PM »
I'm a year out from my ALS fears and it is a hard one to shake. Not only because the disease is so horrible but also because ALS and anxiety directly impact your nervous system. I think I spent close to two months reading / watching everything I could on the disease looking for reassurance. The problem with that is factual assurance only helps a rational mind and I was far from rational. I was a 31 yr old male as well and saw how statistically rare it would be for me to develop the disease but still believed I was going to be that 1 in a 100 million that did. I experienced everything you described as well. The twitches and cramps, slurring, weird sensations in legs, arms, throat and so forth. I got to where I was doing a whole battery of self-testing each day to prove to myself I was not growing weaker. Mine even started on the left side as well.

1. There is a actually a variant of BFS called BFCS where the "C" stands for cramping. But cramping in general is very common with BFS and with anxiety. Your body in an anxious state depletes vitamins much faster than in a relaxed state which obviously leads to cramping. There is also typically not a bad side in ALS, at lease at the beginning. It usually starts in one muscle group (typically a hand or foot) and then progresses through the body leaving in it's wake paralysis. As one ALS specialist said, don't worry about cramps or twitches as those are common occurrences and ALS is not common.

2. The argument over the size or frequency of twitches as some sort of indication of BFS or ALS is varied all over. Some claim that ALS sufferers can't feel the fasics in the beginning and others say they can and so on. The only consistent information I found was that any twitches at all without clinical weakness was not ALS. I've had the big thumping ones in my calves, biceps and back muscles. I've also had the ones you can barely see in the base of my palm.

3. Like I said above, mine all started on the left side. The muscle in between my thumb and forefinger started twitching. A few days later the muscle in my thigh above my kneecap started it's own thing. Scared the crap out of me for the same reason it is scaring you. Then I was relived when a few weeks later I started twitching on my side. That relief lasted all of 2 hours though. I started in with the "what ifs" and right back to square one.

4. One thing to remember with ALS is that it doesn't hit you all over at once. It progresses throughout the body. So if it started in left foot or left hand, it's going to just about completely paralyze those limbs before moving on to your throat or mouth muscles. Everything I read about bulbar onset or bulbar issues said the people always started with either having trouble drinking thin liquids or would sound like they were drunk when talking. It's also not something that came and went, it was full on and never got better.

5. Anxiety and it's friend depression are both known to create fatigue. Both states are just taxing on your system. Loss of appetite and weight loss are common with anxiety. I dropped 10+ plus pounds in a matter of weeks. I forced myself to start drink Ensure and stuff to put weight back on.

Based on my over zealous reading about this horrible disease and personal experiences, everything you described I can relate to and would say is anxiety. Still go to your doctor and get checked out but I encourage you to go with it mind that it's either this horrible disease that you kind of have some symptoms of or it's anxiety. That way when the doc tells you it's not ALS you don't just leave and are happy for a few hours before you start to doubt them. That way, you can say then I need some help with anxiety and start addressing that. If I had done that, it would have a saved me a lot of money and a lot of grief from my family and coworkers. Hope this helps.
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Offline mjd83

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #6 on: May 06, 2014, 08:50:31 PM »
Wow, too say you guys are awesome is an understatement! I actually do feel better at the moment, as your replies were more reassuring than the 100 or so google searches I've done in the last few days. As I noted, this is not my first HA scare, as I've been down this road with an HIV scare (totally and completely irrational) and a long standing chronic myocarditis scare (a little more legit considering symptoms), but this one is by far the worse.

I won't say that I'm completely over it, but I do feel a ton better reading your responses. Unlike most people, who seem to have the fasciculations first and then do the google search, I was already worried about ALS, and the fasciculations started about two days in to the panic. I was actually holding alright until the mild cramp (I would describe it exactly how someone above described it for his biceps). That set me over the edge because now that I had the twitches AND the cramp, it must be ALS! Most people on the BFS forum site didn't mention cramps, but it is SO reassuring to hear that their are lots of people who have had ALS scares who have experienced almost exactly what I have, thinking that they were the only one.

I guess it makes sense to step back and put into perspective just how rare this disease really is. 2 in 100,000 is a hard thing to picture, but I tried to put it into perspective by looking up how many new cases of brain tumors were diagnoses every year in the U.S. I don't remember the hard number but I remember it being 4-5 X larger than the number of new ALS diagnoses. I remember reasoning to myself that my "perceived" slurred speech was statistically more likely to be due to a brain tumor than ALS, especially at my age.

However, just as soon as the fasciculations and cramp hits the leg at the same time, all the rational stuff goes right out the window and I hit the panic button.

I guess I have underestimated just how powerful of an affect anxiety can have over your life! I never realized that it could actually manifest in real, no b.s., physical symptoms.

Thank you all so much again, and my wife thanks you too. She has been puzzled on why I've been so withdrawn, have stopped eating, lost weight, wanting to go to bed at 8PM, and so distracted I forget to watch Game of Thrones and other things I normally wouldn't neglect. She has been getting mad when I've been glued to google, and constantly asking her if my speech sounds any different to her.

You all rock, seriously.

Of course I know I'm going to second guess some of this and probably need reassurance again, but you guys have made the wait until the doctor a WHOLE lot easier. 
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Offline ShawnW

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Re: 31 y.o. male veteran very concerned about ALS
« Reply #7 on: May 07, 2014, 06:32:51 AM »
Not a problem.  If you do a search for cramps over at BFS you will get a ton of hits.  I cramp in both hands and both feet...on and off.  It's a symptom of a hyperactive nervous system.  I would guess about half of those with BFS have some form of cramping.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

 

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