Old 05-03-2017, 05:39 PM #1 (permalink)
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Default Please. The worry is all consuming.

I'm writing because I've frequented these forums in the past few months. I've read all the stickies, searched past posts, etc. I'm consumed with worry.

Last spring, I bent wrong getting a toy for my son and something shifted in my back. I couldn't feel my leg for 3 months, and I had weakness in my calf. After chiropractor treatments of traction, needling, and adjustments, the feeling came back in my leg. Around October or November of last year my leg started twitching in that calf. It wasn't noticeable at first but it gradually got stronger. I took a video of my twitching muscle at the end of November. The twitching then became body wide. I twitch in my arms, legs, back, stomach, eyelids. I started taking magnesium and vitamin D but I continued to twitch. I saw a neurologist who did strength tests and an EMG and a ncs. Everything was normal except he told me he saw "healing nerve damage" my left back leg. He told me to come back if I noticed weakness.

I then went to an orthopedic who did an X-ray on my back and noted narrowing in my L5-S1 region and early arthritis to my lower back. He then told me twitching wasn't related at all, and rx'd PT and to see a gp for something possibly metabolic.

I continue to twitch mainly in my left leg, but all over as well. I don't think lower back damage would cause bodywide twitching. I've also started cramping in my left calf mainly when I go up on my tiptoe, but it has woken me up a few times in the middle of the night. I also have perceived weakness.

I'm writing here because I've read on this forum and several other places that some twitch for years and years before a diagnosis. That it isn't always weakness that starts the diegnosis, but sometimes twitching before weakness. That sometimes it takes several emg's to find evidence of als, and that several have had clean emg's only to then have a dirty one. I read all the initial stickys and I know these things that I've read contradict that, and how can I believe the sticky when other posts show otherwise.

At this point my brain says early als, nothing else. I have a follow up with a different ortho next week and I plan to get a second opinion from another neurologist soon. I am already having thoughts about not being here for my husband and sweet son in the future. The worry is affecting me more than I thought.

Please give me insight. I can't keep up.
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Old 05-03-2017, 05:42 PM #2 (permalink)
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Default Re: Please. The worry is all consuming.

Didn't anyone order an MRI of your back. That needs to be done to see the full extent of your back injury. Nothing sounds like ALS to me.
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Old 05-03-2017, 05:44 PM #3 (permalink)
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Default Re: Please. The worry is all consuming.

Nobody has done an MRI. I will bring that up at my ortho appt next week. Thank you for your reply.
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Old 05-03-2017, 06:01 PM #4 (permalink)
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Default Re: Please. The worry is all consuming.

Smich, there's no ALS in your post.

Can't imagine why you thought about ALS in the first place.

Please tell me what post you read where someone with clean EMGs eventually developed ALS. I'm not saying it can't happen. I am saying that human beings who have not gone to medical school (and passed) are not authoritative.

As to the twitching, you said some people twitch for years and then get ALS. OK. But for 99.999% of the twitching population, we twitch for years, get old, get older, get really, really old, and then die of old age like any healthy person. Your twitching isn't worrisome.

So it seems that you had a mechanical injury, hurt a nerve. Saw a neuro who said he saw some healing nerve damage. Sounds good.
He also said you're OK. All normal. Come back if you experience weakness. Sounds good, too.
That's about as good as it gets with a neurologist.

Reading about ALS will mess with your head. Don't do that. You'll be much happier.
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Old 05-03-2017, 07:07 PM #5 (permalink)
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Default Re: Please. The worry is all consuming.

Healing nerves can mean jumpy muscles and chiro isn't always the thing. Consider massage with an MT not associated w/ a chiro, who specializes in neuromuscular therapy. After the MRI.

Best,
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Old 05-03-2017, 07:18 PM #6 (permalink)
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Default Re: Please. The worry is all consuming.

Quote:
Originally Posted by Atsugi View Post
Smich, there's no ALS in your post.

Can't imagine why you thought about ALS in the first place.

Please tell me what post you read where someone with clean EMGs eventually developed ALS. I'm not saying it can't happen. I am saying that human beings who have not gone to medical school (and passed) are not authoritative.

As to the twitching, you said some people twitch for years and then get ALS. OK. But for 99.999% of the twitching population, we twitch for years, get old, get older, get really, really old, and then die of old age like any healthy person. Your twitching isn't worrisome.

So it seems that you had a mechanical injury, hurt a nerve. Saw a neuro who said he saw some healing nerve damage. Sounds good.
He also said you're OK. All normal. Come back if you experience weakness. Sounds good, too.
That's about as good as it gets with a neurologist.

Reading about ALS will mess with your head. Don't do that. You'll be much happier.

Thanks so much Mike. I appreciate the feedback. I ended up here after (of course) googling the twitching, and of course read and read and read. Now I've read too much.

As far as posts that first emg's were negative and then we're positive, I'm sandwiched between two posters here on the first page. (Knuts and Blurblurb). I understand this isn't the norm. In my head, I saw a neuro who was relatively new. What if he didn't know what to look for? I know that's far fetched but my brain works that way.

Again, I appreciate your reply.
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Old 05-03-2017, 07:22 PM #7 (permalink)
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Default Re: Please. The worry is all consuming.

Quote:
Originally Posted by lgelb View Post
Healing nerves can mean jumpy muscles and chiro isn't always the thing. Consider massage with an MT not associated w/ a chiro, who specializes in neuromuscular therapy. After the MRI.

Best,
Laurie
Thank you Laurie. I will look into that. And I will also push for an MRI. I didn't know healing nerves can cause the jumpy muscles. I don't know why that would account for the bodywide twitches I also experience.

As I said above, im just worried im one of those rare occurrences that initially present with twitching. I'm a worrier like that unfortunately.

Thanks for your feedback.
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Old 05-04-2017, 01:07 AM #8 (permalink)
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Default Re: Please. The worry is all consuming.

"im just worried im one of those rare occurrences that initially present with twitching."

You have every right to choose what you want to be worried about. You already saw a neuro and had an EMG, so now you can pick something else to worry about. I suggest, "getting hit by lightning" or "poked in the eye by a beach umbrella."

That's humor from someone whose life changed dramatically because of ALS.
Those who survive (the family) often learn a lot about life by watching death happen slowly over months and years.

What I learned was this: Don't worry about tomorrow, it will happen whether or not you worked hard to prepare for it. Instead, each morning, if you find you woke up on this side of the dirt, count yourself blessed. Then count your fingers and toes and take stock of your current condition. After that, go live that day as best as you can, enjoying it as much as your situation will allow.

Try to live, Smitch. It's much more fun than thinking about terminal diseases. Good luck to you.
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Old 05-04-2017, 05:05 AM #9 (permalink)
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Default Re: Please. The worry is all consuming.

Also, just to clarify, The two posters you mention have not yet been diagnosed with ALS. You are reaching to try and justify your your worry and anxiety. People twitch, it's not diagnostic of anything. Please find a way to deal with the worry first, that is what is currently having the most effect on your life.
Best wishes.
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Old 05-04-2017, 08:02 AM #10 (permalink)
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Default Re: Please. The worry is all consuming.

Hi Smitch

Your description doesn't sound like als. twitching can be caused by so many things, you had a nasty injury which took a long time to get back to a point where you had feeling in your leg again, but getting the feeling back doesn't mean everything is healed. When you have an injury your gait can change your body adjusts to compensate and it can throw your whole body out of whack. Which can cause reactions in other muscles in you body.

Look at physical therapy, and discuss you fears with your doctor, knowing how much this is worrying you they need to explain in a bit more detail how the nerve damage recovery will affect you and how long it takes.

Good luck

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