Aa
Fear of ALS
Hello,
My mother died almost 5 months ago now from ALS at age 58, and I've been worried that I might have it too ever since (I am 29). In the last weeks of my mother's life I developed drop foot, which is how it started for her. I was in a panic state for a while, until 2 days after she died when I finally got my EMG. The doctor said there was nothing wrong, and that it was just a nerve in my knee that got trapped.
I spent the next three weeks or so relieved, assuming that it would start to heal. However, with still no clearly visible improvement to my foot, a little voice in the back of my head started to gnaw at me: "Maybe you've just been misdiagnosed..?"
The thought started to consume me and ruined my life for a few weeks. It got worse when my muscles started to twitch. I started getting twitching muscles all over my body. Initially it was mostly in my knee, but it has moved on to other parts of my body such as my arms, chest, back, hands, etc. That suddenly made the far-fetched idea a lot more plausible to me.
However, just as I was starting to plan getting another EMG done to be sure, my drop foot healed!
That should really have been the end of it for me, but the twitching stayed, and kept feeding that little voice.
Given the fact that it was only a few months ago I had an EMG done specifically to check for ALS, my doctor doesn't really think it's an option. I have been under insane stress the past six months (as described here), and that anxiety is probably the reason for me to develop BFS. I still find it hard to accept that though, and I keep overanalysing my body for signs of weakness. I lift weights, do push-ups, so far I have not found any large muscles that have gotten weaker. the muscles in my forearms, fingers and calves have been pretty stiff though, but that might just be anxiety related. Some things have bothered me though..
One thing that worries me is that I have had a lump in my throat for the past two months now (I have to clear my throat about 1000 times per day to keep from sounding hoarse). My GP says it's probably due to my immune system not working very well, again because of the anxiety.
Today I found I have trouble pressing things with my left index finger. It hurts in my forearm when I put too much pressure on it, but if I don't I can't get a good grip (e.g. when picking up a heavy object between index and thumb). I know that in ALS a loss like this is pretty standard, which is why it scares me to death. But the fact that I feel a pain sensation in my forearm when using the muscle seems less typical, from what I read. That to me seems more like I hurt something the other night (I slept on a very hard mat on the floor last night after a big party), in which case it should heal soon. I'm no expert though, so I'm hoping you can give me some feedback on that theory.
The fact that the drop foot healed should really have been enough for me, and rid me of my ALS fears, but I've just not been able to relax. What I mostly do every day is try to distract myself from thinking about it, but after months of that it's becoming very hard, and is ruining my life.
What are your thoughts on my situation and symptoms?
Thanks in advance for any information you can give me,
PV
PS. Sorry about the long rant, I just wanted to put all the facts in :-P
My mother died almost 5 months ago now from ALS at age 58, and I've been worried that I might have it too ever since (I am 29). In the last weeks of my mother's life I developed drop foot, which is how it started for her. I was in a panic state for a while, until 2 days after she died when I finally got my EMG. The doctor said there was nothing wrong, and that it was just a nerve in my knee that got trapped.
I spent the next three weeks or so relieved, assuming that it would start to heal. However, with still no clearly visible improvement to my foot, a little voice in the back of my head started to gnaw at me: "Maybe you've just been misdiagnosed..?"
The thought started to consume me and ruined my life for a few weeks. It got worse when my muscles started to twitch. I started getting twitching muscles all over my body. Initially it was mostly in my knee, but it has moved on to other parts of my body such as my arms, chest, back, hands, etc. That suddenly made the far-fetched idea a lot more plausible to me.
However, just as I was starting to plan getting another EMG done to be sure, my drop foot healed!
That should really have been the end of it for me, but the twitching stayed, and kept feeding that little voice.
Given the fact that it was only a few months ago I had an EMG done specifically to check for ALS, my doctor doesn't really think it's an option. I have been under insane stress the past six months (as described here), and that anxiety is probably the reason for me to develop BFS. I still find it hard to accept that though, and I keep overanalysing my body for signs of weakness. I lift weights, do push-ups, so far I have not found any large muscles that have gotten weaker. the muscles in my forearms, fingers and calves have been pretty stiff though, but that might just be anxiety related. Some things have bothered me though..
One thing that worries me is that I have had a lump in my throat for the past two months now (I have to clear my throat about 1000 times per day to keep from sounding hoarse). My GP says it's probably due to my immune system not working very well, again because of the anxiety.
Today I found I have trouble pressing things with my left index finger. It hurts in my forearm when I put too much pressure on it, but if I don't I can't get a good grip (e.g. when picking up a heavy object between index and thumb). I know that in ALS a loss like this is pretty standard, which is why it scares me to death. But the fact that I feel a pain sensation in my forearm when using the muscle seems less typical, from what I read. That to me seems more like I hurt something the other night (I slept on a very hard mat on the floor last night after a big party), in which case it should heal soon. I'm no expert though, so I'm hoping you can give me some feedback on that theory.
The fact that the drop foot healed should really have been enough for me, and rid me of my ALS fears, but I've just not been able to relax. What I mostly do every day is try to distract myself from thinking about it, but after months of that it's becoming very hard, and is ruining my life.
What are your thoughts on my situation and symptoms?
Thanks in advance for any information you can give me,
PV
PS. Sorry about the long rant, I just wanted to put all the facts in :-P
I'm not sure how that forum is more relevant than this one.. The immune system thing is only a tiny part of the problem (I mentioned it in relation to my throat problems). The question itself is ALS-oriented, or at least BFS.
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