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Offline halon451

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ALS Fears
« on: June 11, 2013, 04:08:32 PM »
Hi all, so I have fallen victim to the ALS Anxiety affliction - my story is in my forum intro thread here if you want to read: http://www.anxietyzone.com/index.php/topic,71273.0.html

So here's the deal: In the past two weeks I've run through about every symptom I thought possible with ALS.  I've imagined I had difficulty swallowing, difficulty breathing, difficulty walking, I have performed all kinds of strength checks on my hands, limbs, feet, etc.  And then I found this wonderful forum and wrote a novel about myself. I have also read a lot of the great information in this section as it pertains to health anxiety in particular.

My fear has become irrational. I have harbored little tidbits of information that has only fueled my anxiety of this - for example; ALS typically strikes between the ages of 40 and 50 (I'm turning 40 this year), people who were in the military are twice as likely to get it (served 8 years in the Navy), slightly higher percentage of men than women that get it (check) and a few others. Never mind the fact that despite those things, the odds of becoming afflicted with it are still ridiculously in my favor, as it so rare. But there are those that are actually diagnosed with it, the odds certainly didn't work in their favor... :(

Anyway, back to the point - I've thought I was experiencing symptoms of ALS in just about every part of my body. Started with the widespread muscle twitching, then after learning of ALS, began thinking I had symptoms of weakness, all the stuff I mentioned above.  Finally scheduled the appt with my GP, whom I saw yesterday finally... and we actually spent a good hour or more talking about anxiety.  He prescribed me Buspar and referred me to a counselor to better get my anxiety under control, because yes - whether I have ALS, MS or any other horrible disease I definitely have let anxiety consume me.

Of course I brought up with great enthusiasm my fears of having ALS - he did some clinical checks; had to do the open my mouth and say "ahhh" thing, and no sign of bulbar onset ALS there.. he looked at my hands, noticing zero sign of typical ALS related muscle wasting there... said I had nothing to worry about. It's all in my head.  No need to even refer me to a neuro.

So - I left there feeling great, ready to tackle the true source of my problem which is health anxiety.  Really didn't notice any of the previous symptoms oddly enough, so there's a good sign right?

Today, I decide I'm going to go to the gym.  Combination of aerobic exercise and weight lifting. Ran 2 miles, jumped rope for about five minutes, then lifted weights at about the same weight I usually lift.  No problems, though I was paying particular attention to a persisting aching/weak feeling in my left hand.

The left hand thing has me troubled... I seem to have lost a bit of dexterity in that hand, the joints around the first and second knuckle seem sore and achy.. and since my GP looked at my hands yesterday, I'm now obsessed with looking at them for any visible signs.  On the way into the gym, I dropped my keys when handing them to the girl at the front to scan my membership card.  Instant thought - ALS.  It's like I have lost a bit of control and dexterity in that hand and even as I'm typing this now, I feel a bit of weakness in my left index finger and there's a small bit of pain involved. For the past couple weeks I recall a few instances where it was a bit harder to find the right key on my chain to open the door with that hand, or even pick up a few walnuts from a plate with that hand.. it's not the weight that's the issue, it's the control.  I just lifted a 20 pound engineering manual in my office one-handed with my left hand up and over my head, only clamping my fingers around the top to prove this point.

Now, it could be from overuse - I work at a computer all day long, I work out a lot and oh! Recently I took a bit of a fall when a picnic table bench gave way underneath me while I was standing on it - came down hard on my left arm and hand, but I did catch myself.  Maybe something happened there..   

But nonetheless I'm back to fearing it's ALS related, even one day after my GP telling me there's no way I have it.  I know that, especially in the early onset period, it can be difficult to diagnose.  But I also understand that it progresses rather quickly and the effects are irreversible.. if its bad it will stay bad and keep getting worse.  My mind is a battleground at this point - I don't know what to think anymore.

I just started taking the Buspar today.. I'm hoping this will help, and am going to seek help from his recommended counselor as soon as I get my insurance approval. 

I'm here on this forum because it seemed like a better place to be given my circumstances - I've fallen victim to health anxiety and I don't want to search any more symptoms on the web. So I'm telling them to you all.  My doc wanted to see me again in four weeks as a follow up on the meds and counseling, etc., so my hope is by then I'll be well on my way to recovering from these attacks of paranoia.  There are good days and worse days when dealing with this... I'm sure you all can relate. 

Thanks for reading,

Rob

 
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Offline Catesykes

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Re: ALS Fears
« Reply #1 on: June 11, 2013, 04:41:43 PM »
I can relate. I had an ALS fear a few months back. I'd developed severe HA after a traumatic experience. Still struggling with various worries but overall better. When you are in the 'fear' of a certain disease its horrendous. I did all manner of strength tests and convinced myself I was weak on the left side. (I'm right handed!) I even got family to 'compare'. Looking back now I can't believe I was so convinced.
If you are working out like that you don't have ALS. ALS weakness is not something you sense it's just there. A physical weakness not perceived. You'll be fine :)



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Offline halon451

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Re: ALS Fears
« Reply #2 on: June 11, 2013, 04:48:47 PM »
Thanks Catesykes... I certainly hope so, lol. It's been exhausting the past couple of weeks that's for sure.  And that's what I keep telling myself, that as long as I'm doing that kind of lifting in the gym, etc., there's no possible way it could be ALS - but there's always that element of doubt that's tied to my health anxiety that maybe it is just beginning and hasn't really developed into that kind of clinical weakness yet.  Like you, I'm assuming that time will truly help.. the longer I go without it getting any worse the better I'll feel, but right now I just can't shake it out of my brain.  But better to come here and talk of these fears than continue searching the web for my symptoms...  :bigsmile:
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Offline Catesykes

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Re: ALS Fears
« Reply #3 on: June 11, 2013, 04:58:32 PM »
Definitely! I read every story I could get my hands on from the Internet. I kept these stories in my head with all the first symptoms people got with this awful disease. I kept thinking about it over she over. So unhealthy. I'm now going to raise money for the ALS charity here in the UK to try to do something positive. I'm grateful I don't have it.
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Offline halon451

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Re: ALS Fears
« Reply #4 on: June 11, 2013, 05:05:34 PM »
Cheers to you for it.  I have been thinking the same thing myself, once I pull through this panic - as much as I've now learned of this disease I am horrified at how awful it is.  My doc even said (and he's seen a total of 5 actual ALS cases in his entire career), that this is one disease he'd consider having Kevorkian inclinations for, especially in the latter stages.  That is something that no one should ever have to go through.. :( If I can get through this and be fine, I would not hesitate to donate money to ALS research.

Hence my current panic, of course.
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Offline halon451

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Re: ALS Fears
« Reply #5 on: June 11, 2013, 11:34:43 PM »
Guys I'm giving this a bump. I believe I'm having a bit of a panic attack over the fears of my left hand that I mentioned above. I have actually noticed a loss of dexterity in this hand and can't shake the feeling that perhaps this is a sign of onset of ALS..my grip strength overall is still good but I've been noticing myself fumble with keys, with my lighter, or any other small objects I try and manipulate. It could be arthritis.. There seems to be pain around the middle knuckle and it does ache with more activity but I'm just falling victim once again to this dreaded paranoia that its ALS onset. My irrational mind is telling me that the GP yesterday maybe only did a cursory check, and yesterday when I saw him I wasn't necessarily experiencing the pain so I might not have been paying attention to any dexterity issues...

I'm kind of freaking out, hoping someone here can help reassure me.

Thank you. :( I've come to accept I don't have full blown ALS yet.. My fear is that this could be the start if it? Isn't this how it first presents in many people?
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Offline halon451

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Re: ALS Fears
« Reply #6 on: June 12, 2013, 08:33:39 AM »
Anyone listening out there?
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Offline MrMoleHill

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Re: ALS Fears
« Reply #7 on: June 12, 2013, 11:34:42 AM »
halon451,

Below is my blurb that I just posted in 2 other threads recently. MS and ALS seem to be really hot topics in the last 2 weeks, in particular.  My grandmother had MS, and her sister had ALS!  So, I went through the ALS, MS, Parkinson's fears last year, due to the family history and my symptoms, and it's what lead me to this forum.  Even when I went to the doctor, regarding the below symptoms, he was stumped and said, "Hmmm...could be MS".  Everything seems like a lifetime ago, and you can get past these worries. I definitely did, and so have others.  I think what finally helped me is to realize that there are so many things that we could worry about, and it all comes down to a choice of letting go.


I had fear as a result of the symptoms - and loss of function. And of course I Googled everything and came up with ALS, MS, and Parkinson's.  Sometimes my right arm, down to my fingers, and from the shoulder and all the way down my right leg would feel "off", weak, tingly, numb, asleep, painful, uncoordinated, and very heavy (like lead), or some combination of those feelings.  Then, sometimes it would all switch to the left side with some combination of those symptoms. Sometimes it would occur on both sides of the body at the same time.  There were times when I could barely write with a pen or use a fork - I could not grip it. My fingers felt frozen, kind of like they would when you've been outside in the freezing cold winter. I couldn't wiggle my fingers.  And of course, there was plenty of twitching, from my scalp and face and down to my calves.

I then gravitated more towards things like having extreme anxiety coupled with and/or triggered by some combination of cubital tunnel and/or carpal tunnel syndrome, or maybe thoracic outlet syndrome.  I don't know what it all was for sure. I got some blood tests and x-rays, and a couple of doctor visits, but never followed through going to the neurologist. Eventually, it all subsided as I let go of the worry. Some of it still happens, but to a lesser degree, and I don't worry about it when it does
.


Unfortunately, the mind is an intelligent thing, sometimes too much for it's own good; because now I've just moved on to fears of a different nature, as the neurological ones have past.  I believe this is because neurological symptoms and pain syndromes are ones that you cannot necessarily see, but merely feel. So now, my fears and worries are centered more around the visible and exophytic maladies and diseases, e.g., skin cancer, melanoma, oral cancer. And trust me, when you start to examine your body obsessive compulsively from the hypo/HA perspective, you will find things. I know I'm delusional, but it's like I'm in a pit and can't get out!
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Offline halon451

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Re: ALS Fears
« Reply #8 on: June 12, 2013, 12:50:06 PM »
Great reply thank you. I'm really trying to convince myself that the weakness and clumsiness I'm suddenly feeling in my left hand is a combination of mental factors and some probable overuse strain of some kind from working out. I saw a thing where someone mentioned that in many cases ALS will start in the pinky and ring finger, to which I promptly began this freak out episode.

I'm trying I really am.. I appreciate your thoughts.
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Offline mjd83

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Re: ALS Fears
« Reply #9 on: May 08, 2014, 05:04:46 PM »
Halon,
 
Just letting you know I sympathize with you completely. I am 31 but also male and military (actually served in Iraq with the Army so my probability of being exposed to bad stuff might be fairly high). I also am caught up in an ALS terror right now. It all started with dropping a strawberry with my left hand, believe it or not. I had actually been feeling down for weeks with what I thought might be CFS, and was actually googling MS and Fibro when I stumbled on ALS.

Since the dropped strawberry, I have suddenly noticed lots of fasciculations, mostly on my left calf but occasionally all over my body. I won't go into much detail since I recounted it recently on a post in here.

However, you and I are stuck on the same issue. I have subjective and objective evidence that my left hand has a weaker grip and pinch than the right. I recently took a physical capacity test for a job and although they aren't too forthwith with the information, I happen to notice my right grip was rated at 90-90-85 (three repetitions) and my left grip rated at 80-80-75. I think the pinches were similar. I don't exactly know what those numbers mean but I do know proportions, and that is about a 12% decrease in strength for my left hand.

Today, I was trying to squeeze mustard out of one of those difficulty shaped bottles and was able to get it out a lot easier with my right hand than my left, which is freaking me out. I went to google (something I am trying to avoid) and found a study on grip strength that found that left handers have equal strength in both hands (normally) while right handers have on average (for the study) about 12.4% less strength in their non dominant left hand from their right.

I'm still trying to convince myself, but hope that helps. You have someone else with similar fears with objective evidence of a weaker left hand/arm and also atleast one medical study citing a difference in grip strength around 12% between dominant and non dominant hand.
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Offline thenomnomnomicon

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Re: ALS Fears
« Reply #10 on: May 08, 2014, 05:33:34 PM »
Mind if I board the S.S. neurotic?
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