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NickT76

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Jul 3, 2013
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Learn about ALS
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New York
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Staten Island
Hello everyone thank you for taking the time to read this and hopefully point me in the right direction. I"ll try and keep this as short as possible.

For the past few weeks I've been experiencing extreme fatigue in my left arm and left hand. It seems to have been getting gradually worse by the day. By fatigue I mean everything just feels really heavy and every little activity makes it tired. Over the past week or so I'm now getting this cramping achy spasms in my left shoulder and bicept and now in my hand and wrist. I really feel it in my wrist when I press up against it or use my left hand. On top of that I do get this tight achy feeling on the side of my neck. Also very oddly every time I wake up the joints in my left hand feel very tight and I have to work my hand to loosen them up.

I did go to my neurologist because this has been building up so much and literally started shaking and crying in her office thinking about what's going on with me. She did a neurological exam. Not sure what she was looking for but sat me down on the table and said there was absolutely nothing she noticed that was even remotely close to ALS. Again I'm not sure what she was looking for.

She has scheduled and EMG and Nerve Conduction study. She thinks I might have a pinched nerve somewhere. The test is 4 weeks away. She did put me on an anti anxiety medication per my request because I feel like i"m gonna crack up.

Fast forward to today the cramping in my left hand and wrist have gotten worse and it really hurts. I have it in my head now that whatever is wrong with me is ALS and now my muscles are getting weaker and weaker in my hand/arms.

Of couse I've gone all over the internet to see if what I'm feeling is ALS weakness, cramping, etc. I think the worst thing I probably did was go to the ALS official web site and bam... first symptoms are usually muscle weakness, cramping, tightness, etc in the arms and hands. Then I go to another site which shows that there is usually no pain until later on when the muscles have died.

Does anything I'm describing sound like ALS? Should I accept what my neurologist has said to me and stop thinking about this?

Thanks for any feedback you can provide me.

Regards,
Nick
 
>Does anything I'm describing sound like ALS? Should I accept what my neurologist has said to me and stop thinking about this?

yes, however make sure your neuro studied under and ALS specialist or arrange w/ your pcp to go to a proper ALS facility. how old are you?
 
I'm going to be 38 next week
 
It does not sound like ALS to me. My weakness is not a feeling at all. It started with my ankle not holding me up. To this day my ankle feels fine. My calf feels fine too but to my surprise recently found I can't do a calf raise or walk on my toes. No pain no weakness just does not work. I keep thinking it will if I just try harder but of course it doesn't. Your neurologist has given her opinion and is following through. Relax and let her do her job. If you do not get answers then you can think about what to do next
 
What you are feeling is... feeling. And ALS is about failing not feeling. ALS is clinical weakness; what you describe is perceived weakness. What is it you can't do? Stand on your toes, raise your hands above your head, button a shirt, open a jar, stand? (Read the stickies)

On reading your description, my first thought was pinched nerve, possibly a ridiculopathy, but possibly lower down, possibly even CTS (carpal tunnel syndrome), which can cause you to sleep in weird positions which then affect the elbow and neck. The EMG will answer that question quite well. So you are already headed in the right direction.

Stop thinking about ALS because I do not think your symptoms sound at all like ALS. Just wait for the EMG and accept the doctor's opinion when she says it's not ALS.
 
Thank you so much for taking the time to respond to me. What is it that I can't do right now? I can pretty much do everything, all be it with a little bit of struggling. I guess I'm all caught up with the perceived weakness and feeling that some how this is going to turn into clinical weakness any day now. I definitely suffer from health anxiety so it probably doesn't help the situation much, especially when I keep reading about different manifestations of this on your forum and other sites.

It sounds like based on your feedback to me if I was in trouble I wouldn't be feeling like jelly, weak, crampy, stiff and achy at all. It would just turn "off" on me and that would be the end of it.

Again I really appreciate taking the time to share their opinions with me.
 
Does this sound like ALS?

Hi everyone last night I noticed a strange symptom in my left pinky. When I place my hands in a keyboard position or playing piano position, the middle pinky joint seems to "collapse" (pop in) when I apply a certain amount of pressure. The upper part of my pinky remains bent down and tight but it's the strangest thing. I can move the positioning of my hand and it goes back into a bent position. If I grab something with my left hand with just thumb and pinky the same thing seems to happen. My right pinky kind of does it but not as much. I tried to compare both hands to see if this middle joint is in the same position. Most of the time it is but this left pinky middle joint does seem to pop collapse.

I've been so scared over the past 5 weeks that I might have ALS (left arm muscle fatigue, muscle cramping, etc). This new symptom seems to be more fuel to my fire.

I did have see my nerologist 2 weeks ago and had a normal physical exam. My EMG is still 2 weeks away and I'm freaking out. I did have clean upper EMG 2 years ago. Not sure if that matters much.

I'm probably going to regret asking this but is this how muscle weakness presents, or, does it sound like I'm double jointed and I'm just being overly anxious?

Thanks for taking the time to read this.
 
Please do not start new threads for every little symptom. I have merged this one but have low tolerance for repeat offenders and will delete. As long as this thread is open if you must post post here. In my opinion I will choose option 3 overanxious. Go and live your life have your emg and then update us if you wish
 
NICKT76: I'm happy to say you don't have ALS.

I understand your concerns, and I carefully considered every word your wrote. I have had those exact same symptoms, including the pinky thing (which concerned me, too, but it went away after a few days). I don't have ALS.

Especially forget about the fatigue and heavy feeling. As Dusty said, ALS is about FAILING, not feeling. Muscle weakness presents as WEAKNESS, not perceived weakness. My wife (RIP) simply fell over. Felt fine, but fell over. Her muscles never bothered her a bit, they just didn't work. She FELT quite healthy throughout her ALS journey, even as muscle after muscle failed.

Keep your EMG appointment, because there's lots of things it can tell your doctor.
 
Re: Does this sound like ALS?

Hi everyone last night I noticed a strange symptom in my left pinky. When I place my hands in a keyboard position or playing piano position, the middle pinky joint seems to "collapse" (pop in) when I apply a certain amount of pressure. The upper part of my pinky remains bent down and tight but it's the strangest thing. I can move the positioning of my hand and it goes back into a bent position. .

Think Ulnar Nerve entrapment. STOP thinking ALS. Jeeze.
 
She did a neurological exam. Not sure what she was looking for but sat me down on the table and said there was absolutely nothing she noticed that was even remotely close to ALS. Again I'm not sure what she was looking for.

She was looking for signs of something that would/could require her care. She didn't see anything but ordered more tests to make sure.

Right now you wouldn't believe God if he told you one way or another so,
1. go get the tests
2. get control of yourself
3. IF #2 isn't possible get some interim mental health treatment.
 
can't we delete our own posts during the edit window?
 
Max, I don't see a delete button, but you can always erase the contents of your own post using the edit function.
 
Last edited:
>but you can always erase the contents of your own post using the edit function.

yea, that's what I did. I also reprogrammed the Alt-S key to generate tab+enter so I don't lose edits with an accidental alt-s :)
 
How can I program my keyboard? (I used to be quite smart with computers, but got left behind when they invented the pentium chip.)
 
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