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Author Topic: ALS fears. Anyone else?  (Read 468 times)

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Offline jsnichols23

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ALS fears. Anyone else?
« on: October 11, 2013, 05:59:04 PM »
My name is Joshua. I am a 22 year old male with constant fears of ALS.  I consume myself with searching symptoms and I have to some extent convinced myself that I actually have this horrible disease(my heart goes out to the people that have it).  I have a very odd sensation in my left foot. I have had this warm/buzzing/cramping feeling for about 3 weeks. I have no noticeable weakness and I can run/sprint jump as normal.  But the feeling remains no matter how much I think about it.  Could this be the very early start of ALS?  I constantly check my muscle strength and ability to ensure I have no muscle loss.

Is anyone else experiencing fears or has went through ALS fears to give me some insight?  It really just has been hurting how I live my every day life.  Any posts would be appreciated.
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For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.

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Offline Mr_Dewitt

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Re: ALS fears. Anyone else?
« Reply #1 on: October 12, 2013, 06:48:18 AM »
From what I understand, ALS is a motor neuron disease. So your sensory neurons are unaffected, meaning sensations of buzzing and warmness are in no way indicative of ALS. They are however very indicative of anxiety.
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Offline Dmcrae22

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Re: ALS fears. Anyone else?
« Reply #2 on: October 12, 2013, 11:34:30 AM »
Hi Joshua and welcome to this site. Fears of ALS is what bought me here as well about 6 months ago. You'll find it's fairly common fear for those with anxiety because both affect the nervous system and so the physical signs of anxiety often, with the help of a google search or two, lead people to finding ALS. Once you read about the disease and how it has no cure, the fear and panic feed the anxiety and symptoms continue or worsen. The good thing about this site is that the users on here understand how real the fear is. It is consuming and really creates a constant state of worry and dispair.

Couple things first:
- ALS is very rare. It affects less than 1% of 1% of the US population.
- The average age of onset is ~56. I know stats didn't help me too much at the height of my fear because I always told myself I was the exception. But these numbers are real and with reason.
- ALS is defined by progressive clinical weakness. As the previous poster explained, sufferer's don't feel funny or weak, they simply cannot do things like lift their toes or fingers. I was having a lot of twitching, buzzing, etc... and was sure it was this horrible disease. But I could still run, still do push-ups, still exercise. Without the clinical weakness, it's not ALS.

My best recommendation is to address the anxiety. I would spend hours looking up stuff on the internet looking for reassurance and all it would do is cause me more anxiety. I'd do strength tests and those would comfort me for all of about 20 mins. The first big step for me was to stop the googling. I couldn't do it cold turkey but really make an effort to stop the searching. The other thing that helped was to make goals and projects and force my mind to occupy itself with something else. And lastly, don't be afraid to ask your doctor for help. I got to the point where I wasn't sleeping well and my days were filled with worry. In general I'm not a big fan of meds but they do help and they helped me. Hope this helps.
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Offline WorriedDad74

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Re: ALS fears. Anyone else?
« Reply #3 on: October 12, 2013, 02:34:21 PM »
This is a really good post. I would just like to add that I have the twitching/cramping/buzzing feeling in my calf and behind my knee. I've also had a constant twitch in my back for 2 months. I've had an MRI and been to two neuros. They've diagnosed me with BFS which is how I ended up here. I still worry about ALS (and the other ones like PD and MS) but I've had a tremendous amount of anxiety (and lack of sleep) for 7 months which is a much more logical explanation.
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Offline jsnichols23

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Re: ALS fears. Anyone else?
« Reply #4 on: October 12, 2013, 03:32:06 PM »
Thank you both very much for your responses.  I am so happy to have found this website to find that people like me with my ALS fears exist.  I will definitely try to limit my google searching more and more every day.  As far as the comment on statistics--I completely agree, I feel as though I am one of those statistics, and if I am not now I will be. I feel as though so much stress and anxiety will lead to this horrible illness.  I know one day I'll be through this and I have to keep committing to winning this battle with anxiety. I really don't want to feel like I am losing out on my 20's worrying about my health. 

I again appreciate your responses, I can tell the people on this forum really do have cares and interests unlike some people I talk to in my everyday life--not necessarily that they don't care--they just don't truly understand.  To finally have people that understand hypochondria--it is really re-assuring

Thanks,

Joshua
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For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.

John 3:16

Offline jsnichols23

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Re: ALS fears. Anyone else?
« Reply #5 on: October 13, 2013, 03:39:22 PM »
I guess I also have one more question.  Something that has made it quite difficult to get over this fear of ALS--I have had just a weakness feeling in my left arm(I am right hand dominant). 

It seems like my left arm is smaller than my right to the point where it is noticeable.  I have played baseball in high school as well as college--is it normal for one arm to be bigger and stronger--I know this is really a comment where it is common sense but I can't seem to come to the realization this is anxiety causing this "feeling" of weakness in my left arm( or if it from over-use from baseball). 

Any comments would be greatly appreciated.  Or thoughts on how to cope and deal with this fear.  I am on medication(celexa 20mgs) as well as I have been trying to reduce my Google time and spend more time on this helpful forum.  Did any of you change your life style--or how were you able to cope with your every day duties while with this ALS fear?

Thanks as always,

Joshua
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For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.

John 3:16

Offline Dmcrae22

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Re: ALS fears. Anyone else?
« Reply #6 on: October 13, 2013, 11:16:19 PM »
Hey Joshua,

First off, ask as many questions as you want man. You may have some that sound silly or ridiculous, but again, we've all been there. When I started seeing a therapist, one of the best things about it was just being able to talk really freely without worrying about someone thinking you were losing it. I'd encourage you to do the same here.

Anyways, yeah I had issues where my left arm felt weak. Everything started for me with my left hand. My index finger started twitching one day at work and it freaked me out. I made the mistake of googling that and like a moth to the flame, immediately was drawn in by the ALS search results. So yeah, for a few weeks I felt like my left hand was weak or that my left shoulder was weak as well. I went as far as to start measuring the size of my forearm and biceps and comparing that to my right arm (I'm right dominant as well). I'd lift weights with my right arm and then test my left arm. I was constantly trying to open jars with my left hand, squeeze paper binders with my left fingers, anything to test the strength in fear that it was suddenly going to be less strong. I'd go to bed at night in fear that the next morning my left arm would suddenly be useless. Your mind can play really crazy tricks on you and the hardest part for me was accepting that it was anxiety. I'd always thought of anxiety as that nervous feeling before a test or interview. So it took me a while truly accept that it was anxiety. Doctor put me on citalopram as well (generic version of celexa). Don't know how long you've been on it, but it takes a while (3-5 weeks) to fully start feeling the effects. My advice with that is too look at the meds as just one tool in fighting the anxiety. They help, but they won't alone help you conquer it.

I did change my life style. I cut out almost all caffeine and started doing yoga type routines in the evening. Work was especially hard for me. I'm in front of a computer almost all day and so it created ample time to look up the wrong things on google and to just space out in my fear and negative daydreaming. I had to start literally writing down a list of what I needed to accomplish each day and tackle each one by one. A lot of times, that sense of accomplishment alone helped a lot. For a while I tried creating a worry time. I kept a separate note pad that I'd write down my worries and fears and then everyday at 3pm I'd address those. Most of the time they seemed silly by the time I got around to reading them. But I started out having more bad days than good, then it started to even out and then I starting stringing more and more good days together and so forth. I wish it were a quick fix but for myself, it just took time. Hope this helps and feel free to shoot me a message if you have any other questions. Good luck.
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Offline Overthinking extrovert

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Re: ALS fears. Anyone else?
« Reply #7 on: December 19, 2013, 07:36:43 PM »
All these changes in the muscles (twitching, buzzing, crawling, cramping) starts only after the weakness sets in because they are caused by the misfiring of the motor neurons. And these twitches are weak, they don't move your muscles so you can't see them through the skin. Although, I have seen a youtube video of someone's leg with visible twitches with a claim that he has a diagnosed ALS. He didn't mention a MRI (but only neurologist's opinion after an exam) and it was in his thigh (ALS starts with feet or hands and this guy is walking) so I seriously doubt that he has it. Therefore, don't you worry! If you can walk or even stand still, you don't have it. Try waiting for a month and if you can stand or walk after that, you are sure that you don't have it. And don't be afraid that you can get it later, positive thinking works (and also the negative as we all have experienced). There is a saying in my country. Literal translation  - don't call the devil because he will surely come. Mind over matter!
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Offline CrazyQuacker75

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Re: ALS fears. Anyone else?
« Reply #8 on: December 19, 2013, 08:54:33 PM »
I to went through an ALS fear, It started when my thumb was twitching and I never read post like this where people explain that  the twitching isn't the first onset of symptoms associated with the disease, I instead went off of Web MD, and Mayo Clinic, who said twitching was a symptom but it wasn't the first. I started having weakness  through out my body, my right calf would go numb, my face would go numb, and eventually my whole body was twitching. My doctor thought it was Anemia, over exertion from working out, and Anxiety. It turned out to just be over exertion, and anxiety. The more you think about it the worse it will get, I know it's hard to believe that anxiety can cause so many crazy and odd symptoms but it does. Try to put the thoughts of it being ALS away for a few days, I bet things will get better, and if they don't, your doctor will be glad to answer any questions I'm sure. I hope this helps, and makes you feel better, I wish I had found this site sooner, the people on here are great and have had many of the unfortunate symptoms, and fears we have. Have a great evening   :happy0151:
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