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ErinT

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Learn about ALS
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00/0000
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State
OH
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Cincinnati
Hello everyone! This is my first post to the forum and am so glad to have found such a rich resource of helpful folks and information.

I had a question about two specific "My Story" entries posted on the ALSA.org website. They are located at:

My Story - The ALS Association
Life Does Not End with an ALS Diagnosis - The ALS Association

My question is related to their first symptoms. In both stories, they talk about muscle fasciculations being among the early symptoms, and in both cases, the fasciculations spread rather quickly.

Are these the exception rather than norm? It seemed to conflict with everything I'd learned about ALS so far.

Thank you for your time.
 
Yes they are exceptions
The first case read closely appears to be the rare respiratory onset and it is not clear whether he had some respiratory symptoms early on that he did not associate with ALS ( reasonably enough). Once ALS has started it seems like people twitch in places that have not yet had weakness. That is different than twitching with no weakness at all.
The second person does not say but it sounds like his first visit to the neurologist she found something on exam as she said it could be ALS which would be odd if the only thing was his report of twitching. He may not have noticed whatever it was but it seems like the doctor found something so someone with twitching and a normal exam would be different
 
Got it. Thanks so much for clarifying, Nikki! :)
 
My Sudden Onset - Sound familiar?

Hi everyone:

My first symptoms were exactly one week ago. I was awakened in the middle of the night by hard muscle twitching in my right bicep. Over the course of that night, I noted similar twitching in my left arm.

The right bicep twitching continued intermittently for the next day or so, followed by constant "popcorn"-like twitching in both my feet. Both of my calf muscles would also intermittently twitch, as well as on parts of my stomach and back. Much less occasionally, I noticed some very rare twitching in both hands around the thumb area. I don't work out or lift heavy things, but I do walk 4-5 blocks a day.

I visited my primary care doc and he ran some blood work. Thyroid, magnesium and other blood markers like potassium, sodium, etc. were all normal.

I've scheduled an appointment for a neurologist and also and EMG. That's about 10 days away.

The twitching particularly in my lower extremities is bothersome and is keeping me awake at night. No real cramping or weakness that I've noticed so far.

I had a neuro consult only a month ago for an entirely unrelated sensation loss issue after I'd thrown out my lower back shoveling snow a year ago. There was never any twitching associated with that. In the consult, I remember him having me walk on my heels and tip toes and then he scraped both my feet and knocked on my arms. The tests were normal.

Not sure what all this twitching is about but, as you may have guessed, all search engines point back to this site :-| I've never experienced anything sustained like this before and, after a week of no improvement, it has me quite worried.

Hopefully, these symptoms and their sudden onset will sound familiar to no one. :)

Thanks for reading and sharing.
 
Not remotely familiar to me. Reread the sticky for this section
 
Thanks again, Nikki. You'd mentioned in someone's post about twitching in a non-dominant arm as pointing away from ALS. What if my initial twitching began in the dominant arm (my right one)?
 
You are really reaching here. True statistically it is more common for ALS to begin on the dominant side. I think 60 to 70 percent? But statistically your chance of ALS is very very very low no matter what your age if you are young it becomes infintesimal
 
Thanks, Nikki. I've become more scared....all of this happened to me in little more than a week. Can ALS affect so many places so quickly? My muscles in my arms and legs, fingers and feet burn as though from over-exertion and cramp up somewhat now but I've done nothing out of the ordinary (just walking). The pain and the twitching has kept me up for several days now. Sorry, just looking for some reassurance.
 
Onset symptoms do not start all over the body, they generally begin subtly in one area. And, no, they do not come on so quickly. Burning and pain........not ALS. ALS is about "failing", not "feeling". You have nothing to worry about.
 
ErinT, it's funny you mention those articles as I've read them both before and thought the same thing. They seem to contradict everything we're told about ALS, both here and in other places, and even from a number of neurologists I've spoken to. They also worried me as they are rather atypical representations.

If it makes you feel any better, I'm coming up on 9 months of constant, 24/7 fasciculations in my calves. I have intermittent fasciculations in other parts of my body. I have no weakness at all. But I do have burning, tightness, and pain, similar to what you've described, and also small cramps daily. Some days are better than others, but in general walking, going up steps, running, and other movements involving my legs are all painful.

But the thing is, they aren't impossible. Yesterday I jumped up two flights of steps just on my toes. I ran 5 kilometers two days ago without any problems lifting and moving my legs. Doing these exercises was painful, my muscles were cramping, it burned like crazy, and it was hard for me to walk after, but I could do them. I have no weakness. Sure, I've felt weak many times over the past 9 months, but I am not weak. And I've had 4 neurologists tell me that I don't have ALS and my diagnosis is likely cramp fasciculation syndrome or Isaac's syndrome. I've done 4 EMGs in affected areas over the past 9 months (all doctor ordered) and they all have came back clean (only fasciculations and cramps).

You're only a week or so into this, so give it some time. See a neurologist and have any tests to alleviate your fears, but don't rush into the worst possible scenario right away. I had the same fears as you. Try to live and enjoy your life as much as you can and, and while you should of course go to a doctor, don't focus on it until it is actually stops you form doing a daily activity, like buttoning your shirt. I hope you feel better and all the best to you!
 
Acronyc, I hope it doesn't take ErinT four neurologists to convince her she doesn't have ALS or any MND like it did you. :)

PS. Is "Acronyc" like in "A chronic..." ?
 
Hi:

I truly hope you're all correct and I'm worrying about nothing.

My primary care doc ran some tests:

Thyroid: normal
Magnesium: normal
Potassium: normal
Glucose: normal

This would rule out most of the chemical-based reasons for the twitching. The cramping in the muscles and muscle fatigue after short walks started about a week ago as well.

To date:

Feet: Multiple bursts of twitching in various parts of my feet
Calves: Intermittent twitching, about once or twice every 30 seconds or so
Arms: Both have intermittent twitching, and the right arm was the first onset that I noticed.
Hands: Less often, but when they twitch, it's in the fleshy part of the lower thumb or the palm opposite of the thumb.

Some earlier signs that I may not have picked up on:

I held a medium saucepan with a handle for about 10 minutes and then I noticed my arm/hand were shaking as though dramatically fatigued. This has happened multiple times with the same fairly light-weight saucepan.

I've been biting my tongue more often than usual.

I noticed prior to the twitching (about 1 week prior) that I was developing pains in my achilles tendon area. This would suggest my gait has changed.

Neurologist appointment and EMG are Monday. Wish me luck!
 
Al, I hope so too! In my defense, I saw my first neurologist after about a month of fasciculations and she blew me off because of the amount of exercise I used to do. After six weeks of symptoms my second neurologist took me seriously (and actually mentioned ALS as a small possibility, along with CFS, Isaac's, Lyme, MS, and others) and I was hospitalized for two weeks to run a gamut of tests, where my main neurologists worked with another, hence numbers 2 and 3. The last neurologist I saw was for a second opinion. I was told I'm not 100% out of the woods yet, but that they're 95% sure I don't have ALS, and anyway nobody can be 100% sure of anything. I'm grateful and I'm trying to stay positive and go on with my life!

As for acronyc, you have the pronunciation right! It's an astronomical term that is synonymous with acronychal, which means something rising at sunset and setting at sunrise.

ErinT, good to see that you're getting tests done. The EMG is the big one, and once you get that you'll be able to get a better sense of what's going on. I've had all the same tests (and other not so fun ones like a lumbar puncture) and they all came back okay, and I have a lot of the same symptoms as you do and have had them for nine months. So it could be something similar to what I have, either cramp fasciculation syndrome (CFS) or Isaac's syndrome. My main neurologist told me that both CFS and Isaac's mimic certain ALS symptoms so I know it's stressful, but it's good you're getting it checked out and remember to listen to your neurologist. They know a lot more than us.

Regarding your symptoms, I've had shaking hands from holding a light cardboard cup and I asked my neurologist about this and was told its not pathological. I can hold the cup just fine. Shaking hands/arms/legs is something completely different than real tremors.

I've had all of your symptoms, probably worse in the calves as the fasciculations do not stop for me. Not for a second since May 2014. And the burning/pain/cramps are every day. Even when I don't do anything for hours or when I get up in the morning. You might want to ask your doctor about CFS, Isaac's, or their little brother Benign Fasciculation Syndrome (BFS). All of these are real problems with real symptoms that can be debilitating, and BFS is much more common than ALS, so one of these could be a possibility.

Anyway, good luck with your EMG and neurologist appointment and try to keep a positive attitude. Hopefully after your appointment your concerns can be put to rest!
 
Acronyc, as you wrote,

(... but that they're 95% sure I don't have ALS, and anyway nobody can be 100% sure of anything. I'm grateful and I'm trying to stay positive and go on with my life!")

I guess the big question would be... So, why are you still here?

You hoped ErinT's EMG would put her mind to rest but it hasn't seemed to work for you. :)
 
Al, I log on every now and then to try to give a little advice to others who might have similar symptoms to myself and be worried. Particularly for CFS and Isaacs, which have similar symptoms to early stage ALS, I know how easy it is to end up here and be concerned. My mind is at ease and I've gone on with my life as best as I can (just trying to get my legs to cooperate!). Some people here have helped me before with their advice and support, and I just try to do the same for others sometimes. Hope that's okay! :)
 
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