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Author Topic: Really could use some input, thanks in advanced.  (Read 332 times)

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Offline gvjaguar

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Really could use some input, thanks in advanced.
« on: December 15, 2013, 07:54:32 PM »
Hey everyone,

I posted a thread a couple days ago about how I was deathly afraid of coming down with ALS or MS a couple days ago and I'd like to thank those of you who took the time to reply to me and help me out, it was very much appreciated. As apart of my healing process, I'm desperately trying to rationalize everything in my brain as to what is happening to me in order to ease the tension in my mind and my body (easier said than done, right?) and as you all know, getting over anxiety is quite difficult.

Basically, I'm curious as to what some of you experienced when it comes to fearing MS or ALS. I'm a healthy, 21-year old male in college and after I started a new job, I began having muscle spasms in my legs and back (since I'm a cashier) from standing on my legs all day. Although I've since switched to better fitting shoes, I don't have as bad spasms in my thighs, I still get them in my calves, feet, back, shoulder, arms, and hands to some extent. Every time I have a muscle twitch I can't just shrug it off, I assume something HAS to be wrong with me or else it wouldn't be twitching. I keep thinking to myself, I'm too young for ALS, and since i've been worrying about it for so many years, it would have HAD to manifest itself by now at this point.

I'm just so deathly afraid of obtaining MS or ALS that its interfering with my ability to live my life and I can't help but keep the thought of me going paralyzed and losing control out of the back of my mind. Can anxiety really cause all of these muscle twitches, spasms? Even occasional head aches? It's driving me insane.

I'd like to point out that for some reason, when I stiffen my lower back up or sleep with a pillow around the lumbar area, the spasms seem to decrease dramatically. Could a pinched nerve or muscle strain from standing on my feet all day cause this as well? I apologize for so many questions, but I appreciate all the help and input I receive from everybody on here. This forum seems like a God-send after the personal hell I've been through. I can't even enjoy the Christmas season because of all this. I can't help but think the muscle twitching means my muscles are dying and that I'm slowly going to be paralyzed. I don't experience any actual weakness, like if I had either MS or ALS, you would think I would KNOW, right? I heard that there aren't any warning signs for MS in the form of twitching, so I'm really hoping it's just over active nerves. I've had tics my whole life, as well as poor posture problems from sitting at a computer for long periods of time (I'm a journalist). That's enough for me, sorry for the long read, and thanks for all the input guys.

EDIT: I think I should also point out that while I'm standing or moving around, I don't feel any muscle spasms or twitches, or at least they rarely happen. Not sure if that's due to posture, but I thought it was important to note.
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Offline michelle360

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Re: Really could use some input, thanks in advanced.
« Reply #1 on: December 15, 2013, 09:05:50 PM »
I'm sorry you are having such a difficult time. First off, forget ALS. You would have much more dramatic symptoms if that were the case. Secondly, you are worried about MS even though it can have "no presenting symptoms" but are worried that your symptoms are caused by MS? MS does not present the way you are describing. Yes, symptoms do vary from person to person but there are some pretty tell tale signs, none of which you are describing. Also, people around here really need to stop lumping MS and ALS together. It's like lumping a murmur and heart failure together. One is signifacantly scarier than the other since one is terminal and one is not (in the majority of cases). Just because you have MS does not mean you will be disabled of paralyzed or whatever it is people think will happen to them. These days diabetes is significantly more life altering and dangerous than MS. Seriously. Anxiety is more disabling and disruptive to our lives than most of these diseases we fear. Doesn't it seem strange the one thing we can TRY to control (since we either have a diagnosis or are pretty certain we have it - hence being on this board), we continually ignore and focus on things that are pretty much completely out of our control? Don't get me wrong, I'm not minimizing the fact that anxiety is serious and very difficult to treat. Quite the opposite, actually. But if we all put as much energy into healing our mental health as we do worrying about diseases many of us do not have, a lot of people would be able to heal from this horrible condition. I have MS. Do I want to give myself these crappy shots every night for the rest of my life and pay thousands of dollars a year for my treatments, check ups and MRIs? Hell no! Do I have to because I need to fight and do what's best formy health for the long run? Hell yes. In my opinion, it would be irresponsible of me to go on with my life as if nothing were wrong, even though I feel fine. It doesn't mean I can stop my treatment. It is the exact same thing with mental health. It is a daily struggle and you just keep trucking on. That's life. We all live for the good days, the good moments, and they are worth it. They are worth fighting for. Now fight for yourselves and get some help for your anxiety.

Sorry about the soapbox speech. I wish you all the best.
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Offline gvjaguar

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Re: Really could use some input, thanks in advanced.
« Reply #2 on: December 15, 2013, 10:12:56 PM »
Hey Michelle, thanks for the quick reply. I apologize for making it seem like MS is the worse in the world, when in actuality its not. I guess the reason I've been on edge so much lately is because I'm dealing with yet another stressful period in my life. I actually went through separation anxiety at a later time than most kids, I've had OCD when I was younger, have had tics my whole life, and had a really stressful experience in college my freshman year that caused me to think I was having heart problems, but the pain and muscle twitches then eventually went away.

Once I became fixated on these two diseases, Dr. Google told me I was gonna die a slow, painful death and perhaps my OCD hasn't let me forget that. Every time I have a muscle twitch I instantly think the muscle is dying and I grow weaker, but there is no loss of muscle strength and I go to work and play sports just fine. So basically, since my twitches are body wide, this is NOT indicative of MS or ALS? Not to mention my age and previous experiences could also rule me out? Maybe this is really all in my head, I just can't believe anxiety will really cause these muscle twitches.

Thanks again for your reply, maybe all I really need is a wake up call. I just really need something natural that wull help lower my anxiety levels that will stop these damn twitches/spasms because they are killing me. I have so much life ahead of me and I don't want to spend it worrying like I have up to this point. Maybe all these pent-up stressful years are finally catching up to me, idk. I guess I just wanted some reassurance I didn't have ALS or MS. Thank you for your time.
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Offline michelle360

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Re: Really could use some input, thanks in advanced.
« Reply #3 on: December 15, 2013, 10:39:04 PM »
I get it, I really do. I just want people to worry about things for the right reasons is all. Cancer is no longer a death sentence. MS is not what it used to be either. I feel that HA peeps in particular make things seem a lot worse than they actually are. It goes with the territory I suppose. It's just that this hypervigilance and over-analysis is really the root of the problem for the physical symptoms we have. Which match up rather nicely with digestive, heart, and neurological diseases. It's a cruel conincidence, really. I have been there. I do have a pretty crappy disease if I let myself get all catastrophic in my thinking I would probably be freaking out every day of my life until I die. Sucky. No thanks. But when my anxiety was sky high I felt 1000 times worse (this was all before I was diagnosed). I just can't afford the stress anymore since when I do get wound up I tend to go partially blind and my hand is completely numb for about a half an hour! At any rate, anxiety does pretty much the same crap to people as MS. Good thing is anxiety can be "cured" and if not, controlled. From what I have learned about MS and experienced myself i don't think you have MS.
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Offline gvjaguar

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Re: Really could use some input, thanks in advanced.
« Reply #4 on: December 15, 2013, 11:17:37 PM »
Thanks again. The thing that really scared me the most was that I started to develop this twitching under my knuckle on my left hand that seems to come and go throughout the day, especially if I'm using that part of my hans and its scaring the crap out of me. There's no numbness or pain but I can't stop thinking something is wrong with me.
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Offline utahguy058

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Re: Really could use some input, thanks in advanced.
« Reply #5 on: December 15, 2013, 11:42:06 PM »
Hey GVjaguar. I understand that the twitches you are experiencing are very terrifying. First off, what you are experiencing as Michelle said is not indicative of MS, you can just forget all about that! Second off you do not have ALS either. Pay attention and follow along at home why you do NOT have ALS.

First off, age. The average aged for onset of ALS is decades ahead of your young self. That alone drastically cuts your odds. Next off, it is an incredibly rare disease! There are more people at a NBA basketball game in Indiana than the entire total of people with ALS in the United States. 20,000 people out of 310,000,000. Next off with ALS you will have CLINICAL weakness. I'm talking unable to button your shirt, unable to walk up stairs, unable to drive a car. Clinical weakness comes before the fasciculations. The twitching in ALS is not sporadic. It is a muscle dying and starts in one spot, usually hands or feet and then works from there. It doesn't jump all around. If you are experiencing twitching and have ALS then you are definitely at a point where you will have noticed weakness. Not perceived, but actual weakness. Can you walk up the stairs on your tippy toes? Can you open a mayonnaise jar? Then sorry, no ALS

However there are a plethora of benign conditions that make what you have happening. In fact 70 percent of people experience muscle twitching. So you are in the vast majority of humans. The reasons for them can be many! One could be muscle exhaustion.. cue standing on feet all day, playing soccer, lots of exercise. Another is low electrolytes, different vitamins and minerals. Pinched nerves can cause them. Piriformis syndrome for example is inflammation of Piriformis muscle located in your glutes that can pinch off the nerve and bring on twitching. Inflammation of nerves or muscles can bring on nerve issues. Did I mention of the huge ones... ANXIETY AND STRESS and lack of sleep. Sounds like something that you are experiencing. Also I think a great resource for you is the website www.aboutbfs.com It talks about Benign Fasciculation Syndrome. It is people in the same scare of you and are scared that their twitches are ALS. BFS is an actual benign condition where the muscles twitch. It is brought on by virus, anxiety, and extreme exercise. I am not saying you have this, but this gives you a great insight as to why you don't have any neurological issue, but something benign.

I hope this helps somewhat. I know how scary this is. TRUST ME, I KNOW! I am walking in the same shoes, for me my scare is MS, not ALS. But I know how scary the thought of not being able to enjoy an active lifestyle is scary. I really truly feel that you have anxiety making worse an issue as simple as tired muscles. It will clear up! It will take time as stress hormones take awhile to clear up, but I can assure you that you are fine and don't have ALS. You do have anxiety, which you are aware of, and that is where you need to focus. Just like I am. Let's grab the bull by the horns and kick some anxiety butt.
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Offline gvjaguar

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Re: Really could use some input, thanks in advanced.
« Reply #6 on: December 16, 2013, 09:14:16 AM »
Thank you so much for that insight utahguy, I didn't realize there were so many factors that contribute to muscle twitching. In my infinite wisdom, I just assumed something had to be wrong when I have a spasm here or a twitch there. Last night in particular my left hand was twitching consistently for the first time ever and I was really freaked out. But since this happens throughout my body everywhere, I suppose it shouldn't raise any red flags.

Thank you as well for helping to calm me down about ALS. I guess I get so focused on hearing the bad things that I assume I'm the unlucky one that has rapid onset diseases and my life is ruined. So the twitches only occur after muscle weakness, it doesn't mean anything is wrong if there is just fasciculations and nothing else is wrong? Interesting, that makes me feel a little better.

I guess this whole anxiety thing is really stressing me out, I just want the twitching to end but I'm so afraid something is wrong with me. Thanks for your input though, I just have to face down this demon.
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Offline DaphneNL

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Re: Really could use some input, thanks in advanced.
« Reply #7 on: December 16, 2013, 10:06:25 AM »
Have you already read the sticky on this board titles; Accepting the diagnonis... ?
I think you can find some answers there.
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Offline dani_leigh

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Re: Really could use some input, thanks in advanced.
« Reply #8 on: December 16, 2013, 10:17:42 AM »
Someone posted a link to this workbook and I saved the link as I found it incredibly useful. It's a workbook for people with health anxiety. I hope you find it helpful http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_ID=53

Praying for you in this journey. I know how difficult it can be. You WILL get through this time in your life!


Dani
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Offline gvjaguar

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Re: Really could use some input, thanks in advanced.
« Reply #9 on: December 16, 2013, 11:51:10 AM »
Dani and Daphne, thanks for giving me some more input.

I have read most of the sticky's posted and they have helped some, although I'm just having trouble coming to terms with my condition. I keep telling myself that I'm fine, but everytime I get a muscle twitch my mind gets the better of me and tells me I'm slowly losing control. I'm working on it, I guess it will just take time.

Dani, thanks for keeping me in your prayers, I can't tell you how much I appreciate that. Its so hard to get in the Christmas spirit when this demon is hanging over my head and I can't tell you how many times I've asked God to take it away.

I know I had muscle twitches a couple years ago during a traumatizing experience, so I guess I should remind myself that these spasms are not indicative of atrophy. I'm 21, healthy, and the rarity of ALS makes my odds of getting this astronomically small. If I could go back in time and not read Tuesdays With Morrie, I wonder how bad I would have been haha.

I just wants these twitches all over my body to STOP. I think if they went away, so would my anxiety..
 but I guess its the other way around, and that makes it difficult.
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Offline Dmcrae22

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Re: Really could use some input, thanks in advanced.
« Reply #10 on: December 16, 2013, 12:16:02 PM »
I know exactly how you feel gvjaguar. I went through an ALS-fear period back in the spring of this year but I wouldn't say I'm fully over it. The twitching is the scariest thing for me and I do wish it would just stop all together. It's definitely decreased in both quantity and strength. Back when it started in April, there would be days when my index finger would go crazy and other days where my pinky toe had a mind of it's own. And the worst was at night. It seemed like whenever I tried to relax at night to go to sleep, these annoying twitches would start. Like I said, it's gotten much better but it's not gone altogether and it may never. Hell, for all I know, I've had twitches all my life and never gave them a second thought until I associated them with a rare, deadly neurological disease (thanks google).

I'm on anxiety meds, I see a therapist on a regular basis and all that has helped. The therapy has helped me identify situations that raise my anxiety and so now I can more easily point to a sequence of events that raised my anxiety as opposed to a scary disease that is going to end my life and ruin my family's lives. One of the best things that helped me is also doing projects. I found giving yourself something to do (fixing something in the house, learning something new, etc) kept me busy and didn't let my mind wander into those scary what-if scenarios. I wish I could say go take get this or that from a pharmacy and it all goes away but it does take time and effort. But I found the more proactive you are in addressing the anxiety, the less time you just think of what-if scenarios and imagining the worst. I spent almost 5 weeks just letting my imagination run wild with ALS fear and it drove me crazy. But anything proactive (therapy, exercise, yoga, meditation) helps tremendously. Hope that helps.
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Offline gvjaguar

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Re: Really could use some input, thanks in advanced.
« Reply #11 on: December 16, 2013, 12:44:40 PM »
Dmcrae,

Hearing your testimony has definitely made me feel a little better, I'm glad to know there are others out there who have had similar experiences as me when it comes to random muscle twitches. The one in my left hand seems like it's been going crazy these last couple days, and it's no doubt worse since I've been thinking about it. I'm just so sick of everything and I want it to end. At this point, I'm pretty sure I should end up seeing a doctor just to get some closure and see what's actually going on, but I'm praying everything goes okay.

I guess the biggest thing I need to know for sure is that this muscle twitching is NOT the result of atrophy, but overactive nerves caused by anxiety and stress hormones. Since I've had OCD my whole life (worse when I was younger) and I've had tics for much of my life, I can't help but think these random spasms must be related somehow, whether it's a chemical imbalance or something else that's hopefully not life-threatening. I'm almost at a breaking point, but I'm trying to keep it together and hope it goes away. I suppose if there was numbness or weakness, I would be much more concerned. But since everything is body-wide, I would HOPE that's a good indicator that it's nothing to worry about.
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