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Author Topic: It's hard to believe, I'm actually fearing ALS.  (Read 165 times)

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Offline NightBlizzard

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It's hard to believe, I'm actually fearing ALS.
« on: May 06, 2014, 05:13:48 AM »
I never thought I would actually come to this board and say this but.

I'm scared that I'm going to get/have ALS.

To be clear - I have never been scared of this before, despite the fact that I knew what it was.

I know that twitching and pain in the legs usually happens later in the disease - HOWEVER. That's not really what I'm scared about. It's more the weakness I've been experiencing as well.

For the past... I want to say about a week or so I have bee experiencing what I thiiink is perceived weakness in my legs? It started off one day when I was laying down watching Netflix, I felt like from the knee down (especially in my ankles and toes) that I had some weakness there, almost like they weren't at 100%. That sensation has now become more constant than not (although I do have moments where I don't really notice/experience it as much). I say its perceived because even when I'm in the middle of feeling that way - I can still walk and run and move my legs around and whatnot.. it stills a little weird but I can do it.

Also I didn't have the weakness long (probably like a day or so) before I began to experience the pain, it started off in my ankles mostly and it felt just like the growing pains I used to have as a kid. I have now begun to have the pain in my shins, and in my knees. Oddly enough however, the weakness & pain... while it affects both of my legs - seems to affect my right left more-so than my left.

I know the fear of ALS seems insane but I don't know... something about the weakness I felt in my legs has really spooked me, mostly because I have never had it for this long before.  :fragend005:
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"Grant that my hands be steady, my aim be true, and my feet swift. And should the worst come to pass - grant me forgiveness"

Offline Cuchculan

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Re: It's hard to believe, I'm actually fearing ALS.
« Reply #1 on: May 06, 2014, 05:44:44 AM »
Just my own opinion. If we experience anything at all and continue to focus on it, it can and does always get worse. If when we first feel off, say ' oh it is nothing '. Just move on with things. Things normally clear up. As our minds are not focused inwardly. Focused on ourselves and the pain we might have felt. But if you are really worried and want some peace of mind, I would suggest you visit a doctor. Have a few tests done. If the doctor thinks it is anything worth testing you for. But anxiety can cause everything you mentioned too. If worried I would suggest a visit to the doctor.
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Offline ShawnW

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Re: It's hard to believe, I'm actually fearing ALS.
« Reply #2 on: May 06, 2014, 07:14:42 AM »
Those with anxiety feel like this...feel like that.  Those with *** just can't do stuff.  It's not about sensations or pain...or I think my leg is getting weak.  It's I am dragging my foot, I can't button my shirt and I could last week, etc.
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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 Scaredofsymptoms

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Re: It's hard to believe, I'm actually fearing ALS.
« Reply #3 on: May 06, 2014, 02:21:42 PM »
I never thought I would actually come to this board and say this but.

I'm scared that I'm going to get/have ALS.

To be clear - I have never been scared of this before, despite the fact that I knew what it was.

I know that twitching and pain in the legs usually happens later in the disease - HOWEVER. That's not really what I'm scared about. It's more the weakness I've been experiencing as well.

For the past... I want to say about a week or so I have bee experiencing what I thiiink is perceived weakness in my legs? It started off one day when I was laying down watching Netflix, I felt like from the knee down (especially in my ankles and toes) that I had some weakness there, almost like they weren't at 100%. That sensation has now become more constant than not (although I do have moments where I don't really notice/experience it as much). I say its perceived because even when I'm in the middle of feeling that way - I can still walk and run and move my legs around and whatnot.. it stills a little weird but I can do it.

Also I didn't have the weakness long (probably like a day or so) before I began to experience the pain, it started off in my ankles mostly and it felt just like the growing pains I used to have as a kid. I have now begun to have the pain in my shins, and in my knees. Oddly enough however, the weakness & pain... while it affects both of my legs - seems to affect my right left more-so than my left.

I know the fear of ALS seems insane but I don't know... something about the weakness I felt in my legs has really spooked me, mostly because I have never had it for this long before.  :fragend005:

I feel the same way NightBlizzard-- in fact I could have written your post. I have been dealing with an ALS fear since early February - so the better of 3 months now and it just won't completely die. I have come along way, but the actual weakness i continue to feel in my right foot/ankle just leaves me on edge. What I think is happening in my case is I have my right arch in my foot beginning to fall and I am super hyper aware of my body (thanks hypochondria) so the off balance feeling I have been having the past few months is my gait changing from walking differently with my right foot being flatter than my left. I have had 2 clean neuro exams, countless mri's and even saw a neuro at our MDA/ALS clinic in late March who told me ALS shouldn't even be on my radar. But everyday I wake up and my ankle/right foot hurt and i walk funny. The difference for us though as Shawn W pointed out is that we can walk.....even though it feels funny/hurts. I can stand on my tip toes and run up stairs, etc.

The ALS fear is a hard one to kick because its just such a devastating disease. I'm trying to focus on the fact that I can still walk daily and will be starting with a therapist here shortly. My anxiety has lessened the longer this goes on and I don't get drop foot. I don't know if my post helps at all, but I want you to know that you are not alone in your constant fear of this disease.
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Offline mollyfin

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Re: It's hard to believe, I'm actually fearing ALS.
« Reply #4 on: May 07, 2014, 01:24:56 AM »
I had my ALS scare years before I knew this forum existed.  When I came here I was floored to realize it was such a common worry - because it's such an obscure disease I thought surely no one else worried about it!

So, yeah, you're almost certainly worrying about nothing.  I know that doesn't make it any easier to deal with, but we're all in this together.  Just work on getting through it.  Most of us have been there, and some of us probably will be again. 

Good luck!
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Offline 3r1cR0c9

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Re: It's hard to believe, I'm actually fearing ALS.
« Reply #5 on: May 07, 2014, 02:56:18 AM »
I actually got a nerve and muscle test(EMG-NCV) because of this fear. I probably had 15 needles go thru me for this test :( super painful. after this my neuro told me to never GOOGLE my symptoms. Except for a VERY MILD CARPAL TUNNEL nothing else was seen in my test but i still get nervous at times about it esp because I am almost always tired/weak but then on vacation i went 50 steps up a mountain/cave & i actually made it!
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