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Alvin10023

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Thank you to everyone on here who donates their precious time to answering questions from strangers on the internet.

I’ve read the stickies, and a significant amount of posts on here (and am moved by your patience and compassion). My question is: in your collective experience, whether personal or through what you’ve learned, are you aware of any cases where the first presenting symptom for someone later diagnosed with ALS was sudden onset of body wide muscle twitching, which then led to a later finding of clinical weakness, atrophy or hyperfkexia? I understand twitching without association with the above three is meaningless, but have you heard of any cases where the twitching was a harbinger of things to come?

Thank you and bless all of you,

Al
 
Alvin,

Are you asking for yourself or someone else?

I can think of no cases where twitching alone for any appreciable period of time was an ALS "harbinger," and certainly no cases that presented with "bodywide" twitching. The latter is kind of a hallmark of BFS.

Best,
Laurie
 
Thank you for your response, Laurie. To answer your question, I’ve been experiencing these twitches for two months now. It was your website that first talked me off the ledge about the twitching and brought me to a place of peace about them. However, as if on cue three weeks ago, I went to place a long plate in the bottom of the sink as I was walking away from it (my wrist twisting back in an awkward fashion with the leverage of the plate) and my hand just cramped without pain and froze up as I placed it in the sink. I had to use my other hand to open it up, at which point the hand immediately went back to full use. But of course, I’m back on the fear merry go round, thinking this is progressing. In your understanding of this dreadful thing, when a muscle fails, is that failure brief with full use returning immediately only to go out again, or is the failure more prolonged? Again, thank you for your time. (My wife’s aunt succumbed to als nine years ago, so please know that I find what you’re all doing here remarkable). Al
 
Very sorry about your wife's aunt. When someone around us dies of ALS, the memory and dread linger.

With the plate, you might have strained a ligament/compressed a nerve in the moment, but there's no reason not to see your PCP and run through strength testing, as a baseline for the future. There is no shame in that. And many people overstrain their wrists/hands at some point just in keyboarding, gaming, texting.

Best,
Laurie
 
I wish it was in the stikie that twitching without CLINICAL weakness is not a symptom of ALS. The hallmark of ALS is a muscle that will not contract, without pain of any sort. I would hazard to guess that there isn't a patient on the forum that didn't begin without weakness. So describing no weakness I see no reason for you to be here.
Vincent
 
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Understood, and thank you. I’ll report back after I see the neuro.

Laurie, you have my personal email from my profile. In memory of my wife’s cousin, I’d like to donate my services - I’m an attorney in downstate New York, and I could help those recently diagnosed by helping them draft a will, health care proxy with living will directives, and a power of attorney. I’m only licensed in New York, and it’s not much, but if I could help save them the expense of such services so they can apply their resources elsewhere, it would be my honor. Al
 
We look forward to follow up posts which are very helpful to future readers. Also they are almost always good news which makes us happy.

Your offer is very generous. Perhaps the best way to do it would be by contacting your local ALSA or other ALS organization that is based in New York.

Best wishes
 
*wife’s aunt.

Great idea. I’ll follow up with a local association, and check back in here next month after my appointment.

Best to all of you, Al
 
That's very thoughtful and gracious, Al. Not to make it too complex, but since the Muscular Dystrophy Association (MDA) and ALSA each interact with different ALS clinics, you might want to contact the MDA as well, and/or individual centers. NYC ALS treatment centers include NYP/Columbia, Mt. Sinai, HSS, Beth Israel and NYU, in case you have existing relationships with any of those institutions.

Best,
Laurie
 
Thank you for the info, Laurie. I’m going to check with the legal aid clinic at my old law school and see if they have any specific contact info. In the meantime, if anyone is ever in a pinch, feel free to contact me at the email address you have on file, and I’ll respond through my firm’s email. I’ll report back here after my neuro appointment next month. Blessings to you all, Al
 
Hello everyone, as promised, I’m writing to provide an update of my situation after my neurologist appointment, so that anyone who stumbles across this post in the future can find some relief from their anxiety. (I note from my original post that I did not provide my personal details: I’m a 49 year old Caucasian male.)

My initial question related to sudden onset of body-wide twitching, and whether in the moderators’ experience such twitching was a harbinger of ALS onset. Since my post, and prior to my appointment, my symptoms progressed from twitching primarily in my calves, legs and feet to the following:

- a feeling of having jelly-like legs
- dull aches in my forearms, wrists, and pain in the base of my palms
- a “funny” feeling when I used my hands, including an awkwardness with my thumbs
- a feeling like saliva was coming out of the corner of my mouth, although every time I wiped my mouth it was dry
- deep tremor like feelings in my abdomen and behind my lats,
- twitching and fasciculations that spread to almost every part of my body, including the area below my eye (not just my eyelid), which impacted my vision, and some of which were like little “pops” beneath my skin, some of which were like rolling muscle indents, some of which were like pings. At one point, my index finger twitched and almost hit my palm.

Does any of this sound familiar?

So this set the scene for my appointment with my neurologist. He checked my reflexes and strength, which were normal, and then asked me about my concern over the twitching. So I told him: I started twitching, which made me concerned so I googled possible causes, then I started freaking out, then I read some things on the Internet that calmed me down, then I read some things that didn’t, and basically I’ve spent the last four weeks vacillating between sheer terror and depressed resignation, walking around giving myself little strength and dexterity tests and asking people if I’m slurring my consonants.

The look on his face said it all. He said, “I really wish someone would change the search engine returns on twitching, because it’s caused a lot of my patients undue stress and anxiety.” Which made me feel better. Then he said he’s referred about one person a year to New York Columbia Presbyterian for diagnosis, which made me feel worse, considering I found some comfort in how rare this disease is supposed to be. I guess sensing my anxiety, he then gave me an EMG right there on the spot, poking me 10 or 11 times in both biceps, forearms, the underside of my arms, my palms, fingers and wrists. After he was done, he told me everything was perfectly normal.

Of course, that wasn’t good enough for me, as I had to elicit the exact testimony I needed (occupational hazard) to ease my anxiety, so I asked him: “just to be clear, do you see any evidence of denervation or innervation in those results?” He then said, “oh that’s right, you’ve been reading up on this. So let me be clear: I see no evidence of active or chronic denervation or innervation.” He also told me, “in most patients, we never discover the cause of the twitching, it just seems to come and go. One day, it’ll go and won’t come back. But it’s not something to be concerned about in the absence of other things.”

So, I hope this is a help to anyone out there who may have experienced the same symptoms I did. I still don’t feel “normal”, but maybe it’s like the old saying: the only constant is change. Which brings me to the real reason I wanted to post an update:

All of us have a choice of whether to control our minds or not. Clearly, I have two paths before me: I can choose to trust in the education and training of a board certified neurologist who in his subjective opinion believes I did not exhibit clinical weakness or atrophy, and in his analysis of an objective diagnostic test concluded that I do not show any signs of denervation, or I can look up the specialist he mentioned at Columbia, make an appointment to see her, and go on and on and on until I give the better part of my life away to anxiety and worry.

Which is where I was headed, by the way. In the time between my last post and my neurologist appointment, I found myself checking back in on this site, 3, 4, 5 times a day. What was the latest post? Are the symptoms like mine? How did it turn out? I seemed to go up or down based upon my latest read.

Not only was this behavior unhealthy and compulsive, it was becoming dangerous. In fact, it reminded me of a Twilight Zone episode. It’s called “Nick of Time”. In it, a newlywed couple traveling through a small town stops at a diner and becomes entranced by a fortune-telling jukebox machine at their table. The couple becomes convinced that they can’t leave until the machine tells them they can go, out of fear that they will suffer a horrible death. Eventually, the couple musters up the strength to ignore the machine and leave, as another couple comes in and makes a bee-line for the table. At the end, as the camera pans out, we see the couple at the table, distressingly trying to get permission from the machine to leave, and we hear Rod Serling’s voice “two people permanently enslaved by the tyranny of fear and superstition. Facing the future with a kind of helpless dread, with two others facing the future with confidence, having escaped the darkest corner of the Twilight Zone.”

I hope that anyone who comes across this post and who may be suffering from fear and anxiety finds the courage to walk away, and to live life.

Finally, to Laurie, Nikki, Vincent, Karen and the other moderators: bless you all. I’m sorry for your pain, if I had one wish, it would be to take it away.

And now: Goodbye.
 
Your detailed update is very valuable, Al, as is the apt reminder of the Twilight Zone ep in question, which I remember, too. And thank you for the kind words.

A friend of mine says, "People build their own prison, brick by brick."

But to anyone laboring under an unjustified fear of ALS, please note -- you can walk away from that diner any time.

Best,
Laurie
 
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