View Full Version : Talk Me Down from ALS Anxiety Please!
I'm a 43 y/o man. It started 2 weeks ago with me not being able to get my left pinky and ring finger to type properly. They felt weak and uncoordinated. I didn't think much of it at first, but as it went on, I started to get worried. Then all of a sudden the twitches started all over my body. Then perceived weakness pretty much all over, but especially in my legs. I keep doing strength tests and I've measured my calves for differences. Nothing objective to note. I saw my primary care physician. She couldn't find any objective weakness but agreed to send me to a neurologist for an EMG.
I actually think the fingers are being caused by cubital tunnel syndrome, which is where the ulnar nerve gets irritated. I tend to sleep with my elbows bent and my hands clinched. Makes perfect sense. I just wish I had found it before I started worrying about ALS. I realize that my symptoms aren't typical of ALS progression, but it's so easy to find posts online where the symptoms are out of order (twitches first for example). Anyway, I'm probably mostly just venting. But I'd appreciate some thoughtful responses telling my why I'm being ridiculous!
BTW, I definitely have health anxiety. This isn't the first time I've thought I have a horrible disease.
You've posted on my Why you don't have ALS thread so hopefully you read it. It's taken from the ALS forum.
Deep down you know what you describe is in no way a symptom. Hope you find you way out of the rabbit hole soon!
Positive thoughts
You've posted on my Why you don't have ALS thread so hopefully you read it. It's taken from the ALS forum.
Deep down you know what you describe is in no way a symptom. Hope you find you way out of the rabbit hole soon!
Positive thoughts
Yes, I did read it. And I appreciate you posting it. It's been helpful. I'm just not there yet. Thanks for the positive thoughts.
KCguy, u have the same problems as I do. And the past 8 months ive had this same dreaded fear. Sometimes my fingers (maybe arm too) feel stiff...but id say its more a perceived stiff because I can still bend them fine.
My ring and pinky finger shake if I extend them. But im pretty sure ive had that for a long time. I also sleep with my arms above my head often, and also type with my elbows on the table. Perhaps it is carpal or cubital tunnel.
My symptoms are all over. This morning it was my pointer finger feeling stiff, then hours later it was my tongue feeling lazy.
Ive had health anxiety since I was 11, and this is by far the worst its ever been. This particular fear we have is a terrible rabbit hole to go down, and unfortunately I went down it too far.
I know how you feel. But I think its a good sign that our feelings are not constant.
KCguy, u have the same problems as I do. And the past 8 months ive had this same dreaded fear. Sometimes my fingers (maybe arm too) feel stiff...but id say its more a perceived stiff because I can still bend them fine.
My ring and pinky finger shake if I extend them. But im pretty sure ive had that for a long time. I also sleep with my arms above my head often, and also type with my elbows on the table. Perhaps it is carpal or cubital tunnel.
My symptoms are all over. This morning it was my pointer finger feeling stiff, then hours later it was my tongue feeling lazy.
Ive had health anxiety since I was 11, and this is by far the worst its ever been. This particular fear we have is a terrible rabbit hole to go down, and unfortunately I went down it too far.
I know how you feel. But I think its a good sign that our feelings are not constant.
Thanks for the kind words. That's about the time my health anxiety started too. I have some theories about where mine came from. Regardless, it's been an off and on struggle since then. Sometimes I can go years between flare ups. Sometimes I worry about several things in a short period.
Get that EMG done. It hasn't helped for me all too much, but it puts MOST people's mind to rest!
Get that EMG done. It hasn't helped for me all too much, but it puts MOST people's mind to rest!
Tuesday! The first neuro they tried to send me to wasn't available until July 31st. I literally laughed on the phone when they told me that.
Capercrohnj
09-06-17, 20:14
It definitely sounds like cubital tunnel syndrome. I had that for years from overpracticing.
ALS is so unlikely in someone your age it shouldn't even be on your radar, and body twitches aren't even a symptom of it. And you wouldn't be talking vague perceived weaknesses- you'd be talking muscles suddenly and dramatically ceasing to work.
ALS is so unlikely in someone your age it shouldn't even be on your radar, and body twitches aren't even a symptom of it. And you wouldn't be talking vague perceived weaknesses- you'd be talking muscles suddenly and dramatically ceasing to work.
Well, I'm 43. So I technically fall into the "more likely" range. But I realize I'm still younger than the average person with ALS. You may have confused me with one of the 19 y/o who posted recently. In any event, I realize I'm still very unlikely to have it. As to the other stuff . . . thanks for the kind words!
Hi! I'm the other 19 year old that posted yesterday with my ALS fears. My symptoms are a fatigued arm and tremors in both of my hands. Before I have ever worried or looked into ALS I had fears of pretty much everything you can think of and I have spent my last 2 years with severe HA. In which I have been perscribed prozac but I don't quite have the stomach to start taking them.
I've done all sorts of strength tests and I feel like my fatigued arm is weaker than my right. But bearing in mind this isn't my dominant arm. I have only noticed that my arm feels weak AFTER I started worrying about ALS. I think there is a very real possibility that our symptoms are rooted inside our heads because we THINK that we have ALS.
Put it this way. Take your mind off it. Go outside, spend time with friends, go get blackout drunk and have a good night. Leave it 3 weeks. Have your symptoms got worse? No they haven't? You don't have ALS.
You can go and find my thread a couple pages back and see exactly how i've been feeling these past couple of days. Just to add, I FEEL like my left hand is slower than my right hand when moving it, yet I just did a keyboard speed typing test and i scored 452 CPM, which is 96.56% faster than all people on average. This tells me that no, I do not have ALS and I do most defiantly have anxiety that is so far rooted in my head that I am actually experiencing some symptoms that I wouldn't if I did not infact have the anxiety.
Feel free to PM me I am always up for a chat!!
Hi! I'm the other 19 year old that posted yesterday with my ALS fears. My symptoms are a fatigued arm and tremors in both of my hands. Before I have ever worried or looked into ALS I had fears of pretty much everything you can think of and I have spent my last 2 years with severe HA. In which I have been perscribed prozac but I don't quite have the stomach to start taking them.
I've done all sorts of strength tests and I feel like my fatigued arm is weaker than my right. But bearing in mind this isn't my dominant arm. I have only noticed that my arm feels weak AFTER I started worrying about ALS. I think there is a very real possibility that our symptoms are rooted inside our heads because we THINK that we have ALS.
Put it this way. Take your mind off it. Go outside, spend time with friends, go get blackout drunk and have a good night. Leave it 3 weeks. Have your symptoms got worse? No they haven't? You don't have ALS.
You can go and find my thread a couple pages back and see exactly how i've been feeling these past couple of days. Just to add, I FEEL like my left hand is slower than my right hand when moving it, yet I just did a keyboard speed typing test and i scored 452 CPM, which is 96.56% faster than all people on average. This tells me that no, I do not have ALS and I do most defiantly have anxiety that is so far rooted in my head that I am actually experiencing some symptoms that I wouldn't if I did not infact have the anxiety.
Feel free to PM me I am always up for a chat!!
I'm the other 19 year old afraid of ALS! Anyone with the same fears (or anything) feel free to PM me too!
Get on my level though, ~630 CPM last time I tested :D
Hi! I'm the other 19 year old that posted yesterday with my ALS fears. My symptoms are a fatigued arm and tremors in both of my hands. Before I have ever worried or looked into ALS I had fears of pretty much everything you can think of and I have spent my last 2 years with severe HA. In which I have been perscribed prozac but I don't quite have the stomach to start taking them.
I've done all sorts of strength tests and I feel like my fatigued arm is weaker than my right. But bearing in mind this isn't my dominant arm. I have only noticed that my arm feels weak AFTER I started worrying about ALS. I think there is a very real possibility that our symptoms are rooted inside our heads because we THINK that we have ALS.
Put it this way. Take your mind off it. Go outside, spend time with friends, go get blackout drunk and have a good night. Leave it 3 weeks. Have your symptoms got worse? No they haven't? You don't have ALS.
You can go and find my thread a couple pages back and see exactly how i've been feeling these past couple of days. Just to add, I FEEL like my left hand is slower than my right hand when moving it, yet I just did a keyboard speed typing test and i scored 452 CPM, which is 96.56% faster than all people on average. This tells me that no, I do not have ALS and I do most defiantly have anxiety that is so far rooted in my head that I am actually experiencing some symptoms that I wouldn't if I did not infact have the anxiety.
Feel free to PM me I am always up for a chat!!
Hey there. I'm not 19. I'm actually 43. The other 19 y/o posted below. So you have the benefit of being far outside the normal age range of a typical ALS sufferer! Lucky you!
I hear you. I can relate. I also did a tap test. I just did the 10 second type where the normal speed is around 63 taps per 10 seconds. I did fine on that -- just like you. As far as weakness . . . I have a story that MIGHT make you feel better. I was talking with a guy last night who has a pinched nerve in his neck. He realized it when his fingers started tingling. Soon thereafter, he tried to do his normal push up routine. He can normally do 3 sets of 50. All of a sudden, he couldn't even do 3 push ups total. His left tricep just wouldn't work. That gave me a nice, concrete example of what OBJECTIVE muscle weakness is. He literally couldn't use the muscle. I realize he doesn't have ALS, but it struck me as a good example of objective weakness as opposed to perceived weakness. He didn't have to think and interpret subtle signs. It was obvious. It made me feel a little better. I'm still going to the neuro for an EMG on Tuesday. But all of my do-it-yourself strength tests have pointed to no ALS. Sounds like yours have too. Hang in there! And remember, the chances of you, as a 19 y/o having ALS is a fraction of a fraction of a fraction of a percent. And even smaller because you haven't found any objective weakness.
Edit: My typing is no match for yours. But I still did way above average. I'm impressed with your and vincy's typing!
Hey there. I'm not 19. I'm actually 43. The other 19 y/o posted below. So you have the benefit of being far outside the normal age range of a typical ALS sufferer! Lucky you!
I hear you. I can relate. I also did a tap test. I just did the 10 second type where the normal speed is around 63 taps per 10 seconds. I did fine on that -- just like you. As far as weakness . . . I have a story that MIGHT make you feel better. I was talking with a guy last night who has a pinched nerve in his neck. He realized it when his fingers started tingling. Soon thereafter, he tried to do his normal push up routine. He can normally do 3 sets of 50. All of a sudden, he couldn't even do 3 push ups total. His left tricep just wouldn't work. That gave me a nice, concrete example of what OBJECTIVE muscle weakness is. He literally couldn't use the muscle. I realize he doesn't have ALS, but it struck me as a good example of objective weakness as opposed to perceived weakness. He didn't have to think and interpret subtle signs. It was obvious. It made me feel a little better. I'm still going to the neuro for an EMG on Tuesday. But all of my do-it-yourself strength tests have pointed to no ALS. Sounds like yours have too. Hang in there! And remember, the chances of you, as a 19 y/o having ALS is a fraction of a fraction of a fraction of a percent. And even smaller because you haven't found any objective weakness.
Edit: My typing is no match for yours. But I still did way above average. I'm impressed with your and vincy's typing!
That's good to hear it sounds like all 3 of us deep down know that it is not ALS. Obviously anxiety being anxiety we all still have those thoughts passing through our head, but hopefully the EMG will help dismay that fear for yourself.
I myself am going to be seeing a neurologist about my tremor soon. I think it is anxiety related though to be honest as some days it is worse than others. I always always have it, even when at rest, but when I am feeling particularity anxious, it is even worse. It also is suppressed a lot when I am drunk, with alcohol being a muscle relaxer, so I guess that is another good sign.
Positive thoughts guys. We're all in one big rocky ship; but with each day the storm grows calmer.
Much love, Calvin.
---------- Post added at 21:54 ---------- Previous post was at 21:52 ----------
I'm the other 19 year old afraid of ALS! Anyone with the same fears (or anything) feel free to PM me too!
Get on my level though, ~630 CPM last time I tested :D
Challenge accepted! I did that on my work laptop and my mechanical keyboard at home just broke on me, so when my replacement comes; expect defeat! ;)
Hope you are doing well Vincy.
Positive thoughts always.
ok so you guys got me hooked into this keyboard tap test lol. But I only see a few online that don't seem legit. One doesn't give results and the other one I don't understand the results. One of the tests, my left hand is a bit faster than my right hand....but I'm right handed and never use my left so I'm assuming that's because my right hand is used far more? Got me worried now lol. But ive always been told that I'm a fast typer.
ok so you guys got me hooked into this keyboard tap test lol. But I only see a few online that don't seem legit. One doesn't give results and the other one I don't understand the results. One of the tests, my left hand is a bit faster than my right hand....but I'm right handed and never use my left so I'm assuming that's because my right hand is used far more? Got me worried now lol. But ive always been told that I'm a fast typer.
Type keyboard speed test and the top one that comes up is the one I used. It should have an eu domain. Can't post links yet.
I too am suffering from ALS anxiety. I have a whole host of symptoms, twitching, perceived weakness, swallowing difficulties, perceived slurred speech, all of which I developed AFTER I read about them. I know this should make me understand their source is psychological and yet I genuinely cannot. I am terrified! And also going to see a neurologist.
Incidentally I also get the cubital tunnel thing; I sleep with my elbows totally bent and always wake up with numb, weak pinky and ring fingers.
I totally relate to how you are feeling. Also I am 40, so not 19 either!!!!
FreakOutQueen
12-06-17, 13:08
Hi all! I have been going through awful ALS fears as well. Luckily, if everyone on here who complained of twitching had ALS, it would not be considered a rare rare rare disease 1/100,000 = .0001% chance. My story is as follows and I'm sure many of you can relate. I have been suffering from crippling anxiety for the past 6 months or so, developed an eye twitch...googled (big mistake) saw ALS and suddenly was twitching in my butt, arms, stomach, thighs, calves and feet...basically everywhere...all of a sudden. So I got more nervous, and twitches got worse. Took the weekend to relax and recharge and found the twitches getting slightly better but not completely gone. Also noticed some tightness and stiffness in my calves which I think is from tensing my muscles, but also an ALS symptom? (Might be wrong). Today, I have felt a few twitches and they are now mostly centered in my calves...start perceiving muscle atrophy...tailspin again...sound familiar? This is why I say the power of our minds is insane. My goal this week is to ignore the twitches and see if they continue to lessen because I can't get in to see a neurologist until September. This rabbit hole is one of the worst I've been down, but I am comforted in knowing I am not alone.
Hi all! I have been going through awful ALS fears as well. Luckily, if everyone on here who complained of twitching had ALS, it would not be considered a rare rare rare disease 1/100,000 = .0001% chance. My story is as follows and I'm sure many of you can relate. I have been suffering from crippling anxiety for the past 6 months or so, developed an eye twitch...googled (big mistake) saw ALS and suddenly was twitching in my butt, arms, stomach, thighs, calves and feet...basically everywhere...all of a sudden. So I got more nervous, and twitches got worse. Took the weekend to relax and recharge and found the twitches getting slightly better but not completely gone. Also noticed some tightness and stiffness in my calves which I think is from tensing my muscles, but also an ALS symptom? (Might be wrong). Today, I have felt a few twitches and they are now mostly centered in my calves...start perceiving muscle atrophy...tailspin again...sound familiar? This is why I say the power of our minds is insane. My goal this week is to ignore the twitches and see if they continue to lessen because I can't get in to see a neurologist until September. This rabbit hole is one of the worst I've been down, but I am comforted in knowing I am not alone.
Sorry to hear you've joined me and some others on here with the ALS fears. If I have one piece of advice, it's to not google things. I don't always heed my own advice on this, but I wish I did. Also, September seems like a long time to wait and worry to see a neurologist. The neuro my primary care doctor referred me to couldn't see me until the end of July. So I called around and got a different appointment within a week with a different office. Then my primary care doc sent the referral to them. Maybe try that strategy. I just think it would be helpful to have a neurologist give you piece of mind so you can start moving on. Good luck!!
Personally, I believe the monies being spent on medical reassurance would be better spent on treating the real illness (anxiety). How many appointments will an EMG buy? Or an MRI? etc.?
Positive thoughts
FreakOutQueen
12-06-17, 15:38
I am on a cancellation list, but honestly, I have sought reassurance for many different diseases for so long now, and nothing has changed. I agree that I spend too much money and time seeking medical reassurance that could be spent otherwise. Honestly, worst case scenario, it is ALS...what can they do for me now that they couldn't in september? I am mobile, and functional. ALS has no treatment anyway...so I might as well enjoy my summer and try to fix my anxiety to see if that will help my symptoms. Just my thoughts.
Personally, I believe the monies being spent on medical reassurance would be better spent on treating the real illness (anxiety). How many appointments will an EMG buy? Or an MRI? etc.?
Positive thoughts
I think there's value in both. I definitely have been treated for my anxiety in the past. Given that there are clinical tests that can be done to pretty much rule out ALS, putting one's mind at ease on that one issue can help clear the road to treating the anxiety overall. If she's not worried about getting into the doctor sooner (which she doesn't seem to be), that's fine too. Some people are better able to deal with their anxiety than others.
There's value in medical reassurance when there's an actual reason for it. A twitchy finger/eyelid etc., a 2 second twinge in the chest or a freckle isn't one of them!
Positive thoughts
FreakOutQueen
12-06-17, 19:39
[QUOTE=Fishmanpa;1686300]There's value in medical reassurance when there's an actual reason for it. A twitchy finger/eyelid etc., a 2 second twinge in the chest or a freckle isn't one of them!
With all due respect, Fismanpa, I have more symptoms than a twitchy eyelid/freckle. I have cramps in my calves and twitches in my calves and toes. I am trying to remain calm about them and they have gotten a bit better. To mock my symptoms is not helpful. Thank you.
[QUOTE=Fishmanpa;1686300]There's value in medical reassurance when there's an actual reason for it. A twitchy finger/eyelid etc., a 2 second twinge in the chest or a freckle isn't one of them!
With all due respect, Fismanpa, I have more symptoms than a twitchy eyelid/freckle. I have cramps in my calves and twitches in my calves and toes. I am trying to remain calm about them and they have gotten a bit better. To mock my symptoms is not helpful. Thank you.
I'm not referring to you specifically. I'm referring to what I see on the boards in general. Many people here have had more tests and doctor visits than I have and I have actual physical/medical issues! AND... to add insult to injury, they get an all clear and STILL doubt medical professionals and scientific tests! I WISH I got the all clears so many here get!
You got the all clear over your breast cancer fears and have been obsessing over ALS for months! I suggest you just go then... Spend the money, see a neurologist, get an EMG and get the all clear! I'll have another "Told ya so" all ready ;)
Positive thoughts
FreakOutQueen
12-06-17, 20:29
Fishmanpa, I generally am so thankful for your level headedness and for being the voice of reason on this forum. I am just scared and trying to manage my anxiety with the hopes that the symptoms will go away. I don't want an EMG - those things look painful! I was able to make a neuro appointment July 19th. I told myself if my symptoms get better before then, I am going to cancel my appointment. I am going to try not to think about it for the next 5 weeks as best as I can. Here's hoping!
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