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hope87

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Hi everyone, and thank you in advance for being so incredible. I've read through these forums, and it amazes me how warm and helpful you all are despite your own hardships.

  • About 7 months ago, I felt a subtle but strange electric sensation in both of my legs. It was accompanied by a slight tremor in both legs as well. It lasted maybe 20 minutes then disappeared-- but the following day, both of my calves were taught and extremely sore. Exactly as if I'd just run 10 miles and exerted them too much. This was the first and only time it's happened, but that's what started everything else.
  • A few weeks later, out of no where, my right eyelid felt like it was drooping. Bad. But it wasn't. But the feeling was so intense I couldn't focus on anything else, and this sensation proceeded to continue-- on and off-- for several months.
  • That symptom has since dissipated, but has been replaced with a feeling as though my right eye muscles are strained. Like they're just working harder than my left eye. Weirdly, it's way worse after I first wake up, but as soon as I start using the muscles to look around... it almost disappears.
  • The past 3 months, I've started feeling a vague weakness in my left bicep and both legs. It doesn't cost any extra strength to move them, per se... they'll just feel like jelly. Like they're shaky and unstable. Also, my left arm will fatigue noticeably faster than my right.
  • Lastly: fasciculations. Everywhere. I'll go days or weeks without any, but then go days or weeks where my legs, arms, shoulders, sometimes even my face, will twitch. A lot. This is occasionally accompanied by a strange buzzing sensation in my muscles, like there's a low-setting vibrator humming inside of me.

My neuro has ordered 2 MRIs (brain and spine), with and without contrast. Came back clean. Two rounds of bloodwork to test for the usual suspects, and then some. Came back clean. And she's given me full 20-minute long clinical examinations twice. And she says both exams were stone cold normal. She says she's at a complete loss.

Tomorrow, however, is my EMG. And I'm scared to death. I'm not talking about it to anyone, because it only freaks me out further.

I realize the first couple of symptoms I listed don't sound like ALS at all. But what about all the muscle twitching? And the weakness? My legs feeling like jelly?

Any words of advice or insight would mean more to me than I could POSSIBLY articulate.
 
Perceived weakness and feeling are not the way ALS presents and twitches are nonspecific and without other findings meaningless. What is your neuro saying? Is MG still on the table?
Do not use lotion tomorrow. Emg will be more uncomfortable. Good luck and let us know what happens
 
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Please read the sticky note at the top of this forum titled "New Members: PLEASE READ BEFORE POSTING!"

Most of your questions will be answered there. If they're not answered, then ask here.
You mention "feelings" a couple times. From the sticky you'll see that als is about failing and not feeling.
Also, als symptoms don't 'dissipate'.

Finally, you're scheduled for the gold standard test, an EMG. That will tell you more than we can.

:^)
 
Nikki and Greg-- thank you both, so much, for your responses. I'm so impressed and inspired by your thoughtfulness. Your words really helped when nothing else did.

I had my first of two EMGs today, on my legs. On Friday, I go back to have my arms tested.

My neuro says she didn't hear/detect anything wrong. She says both my EMG and nerve conduction tests seemed perfectly normal. To say I was relieved would be the understatement of my life. But I'm not getting ahead of myself until my second EMG on Friday also comes back clear.

Thank you both again for your support. I know this sounds cheesy and disingenuous to say over an anonymous forum, but I won't forget this experience, or what I've learned about the ALS community. You guys are the bravest, nicest people. It amazes me. And whenever I have a chance in the future to support ALS research and treatment, I'll be first in line.
 
Hope, sounds like you are on your way to being cleared of ALS. Your symptoms don't sound like it at all and those clean EMGs are the icing on the cake. The fact your eyes are involved leads me to ask what Nikki asked you...MG? When my husband was going through diagnosis I was hoping he had MG, but his eyes weren't involved and in MG they are. Just a thought. Good luck Friday, let us know how you make out.
 
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