I had a seemingly clean EMG after very sudden onset of muscle loss and twitching. Good to go?

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abal115

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Hi everyone. I'm a white 24M. No history of ALS in my family. A few weeks ago I started noticing what seemed to be symptoms of ALS. I actually had a brain MRI done for unrelated symptoms that showed up normal. Then a day or two later I first noticed it was getting tough to keep hold my hands up to the touchscreen computers at Lowe's where I work, and I felt what seemed more like tingling in my shoulders. In the next few days I noticed my movements becoming very rigid like when sitting, bending, leaning, etc. Just not smooth at all. And just two days after that it seemed like my leg muscles had shrunken significantly very suddenly. Like my pants that usually fit quite tight looked a bit baggier on me. That's right around when I started noticing leg twitching as well and a few upper body twitches. I know they say ALS usually starts in one part of the body or one limb so seems weird that this would be all over. I went on a weekend trip in those same few days and walking suddenly seemed a bit tougher. Then after that trip it seemed like my arms, wrists, and neck were suddenly smaller as well.

A little over a week after this sudden onset of symptoms I went to my neurologist who set up an EMG and nerve conduction test for me. The doctor who conducted it has over 20 years of experience and is highly regarded so I assume he's seen ALS to have diagnosed it before. He did it on my right arm and right leg. I wasn't twitching nearly as much during it as I am now. But he had me do basic movements while the needle was stuck in different points. He said it looks normal but that he'd have my neurologist call me with official results later. They called me and said they didn't detect any neuropathy or ALS.

At this point I'm still having more frequent and visible leg twitches as well as twitches in my hands, arms, shoulders, butt, back, etc but definitely most frequent and aggressive in legs. Walking is still awkward but I wouldn't say it has necessarily worsened from a couple weeks ago. Can still run if I want to. I don't think I've atrophied further but I'm afraid to measure and find out that I actually have. But most worrisome to me is my hands feeling weaker. They haven't really felt like my own hands. I've dropped a few things but not like constantly and repeatedly, as I can still turn door knobs, button my pants, carried in several six packs of sodas with one hand, etc. But seems like smaller things are tougher to grip like my fingers were shaking when I grabbed some french fries (does ALS cause shakiness?) But I can still do that, pick up full bottles, cans, coffee mugs, etc. I hope it stays that way. Obviously I'm still very scared but should I really be worrying if the EMG came back looking ok? This onset is strange but doesn't exactly line up with what people say ALS starts out like.

Thanks for any input you can provide!
 

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Clean EMG = no ALS
But that doesn't mean nothing is going on.
It could well be something systemic, viral or a host of other things.
I would return to my PCP and start the process again, rather than saying it is neurological, say what could be going on?
Hope you get some answers soon.
 

abal115

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Thank you for the reply. Before these symptoms set in, I was having symptoms of Lyme disease and possibly the coinfections that can accompany it (vision issues, muscle aches, fatigue, etc). I may need to revisit that. But the anxious part of me wants to have a second opinion on an EMG from elsewhere.
 

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Your PCP is certainly the best person to start any basic labs that need drawing, including Lyme if there is a history that suggests it. What you describe can easily be the result of a virus or many other conditions. S/he can also baseline your strength to be able to monitor any significant changes.

I don't see any reason to think of ALS. Definitely don't work yourself up by measuring any more. That is not a reliable indicator of anything.

Just follow out the diagnostic process, while paying due attention to diet, exercise, sleep, and stress. Even reaching up to a touchscreen many times can put stress on your shoulders, so a close look at your work position might be in order. Pain and stiffness can affect your sleep and then some people might go off into shakiness and changes in appetite.

I'd also consider therapeutic massage.

Best,
Laurie
 

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The problem with anxious people is they have an EMG and say something was done wrong. Then they have a second one and have a reason it isn't accurate either.
Please return to your doctor, as that will be fruitful and move things forwards. Trawling this site will not.
 

Clearwater AL

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Get Real
(This may apply here.... if not, for other anxious people who may read this thread.)

Thousands of people have falsely convinced themselves they have a
serious disease after turning to 'Dr. Google' or the internet, according to
credited research.

Instead of alleviating concerns, 74 percent of those who have self-diagnosed
online searching for their symptoms made them have more anxiety about
their health. Then they relentlessly pursue a diagnosis of that disease only
increasing health anxiety.

That is due to the answers given by Dr. Google. Internet medical advice
was found by researchers to be misleading without proper evaluation by a
a qualified physician.

Sixty-five percent of respondents who used the internet to self-diagnose
themselves the results show typing your symptoms into the search bar
does more mental harm than physical good.
 

abal115

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Well I went back to my PCP yesterday, first time seeing her in months. My biggest concern is having lost 10 pounds in the past month despite eating fairly well, but admittedly my appetite has decreased a bit in the last week or two. She ordered some more blood tests for me including heavy metals like lead. Also put in a referral to UVA for me to have further neurological evaluations done there. Just afraid since my clothes are fitting so much looser and my hands feel weaker as well. Fearful of a day when I wake up showing signs of flat out clinical weakness but I wouldn't say it's at that point. I just don't understand how if it's ALS it would have affected my entire body pretty much at the same time, so I'm clinging to that first EMG and the unusual onset in hopes it's something treatable. Praying a lottt as well. I'm just so young.
 

Clearwater AL

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abal, sentence in first paragraph, first post... " I'm a white 24M. No history of ALS in my family.."

Being just 24 years old and the chances of having ALS... buy a Powerball Ticket for this Saturday night.

The odds are in your favor it's just something treatable. Try and let go of ALS. It will greatly help
your Health Anxiety. I was a Casino player who did well... I'd push in big chips on the 'treatable.'

It's your bet.
 

abal115

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Thanks for the reassurance. My biggest concern is my consumption of kratom products over the past two years. I often used it for anxiety, focus, mood improvement, etc and It wasn't until way later that I realized that a lot of kratom leaves are grown in Asia where the soil is poor and polluted with lead. Some vendors do better quality control than others and mine always said it was "lab tested" but I think all of it contains some level of lead due to growing conditions. There aren't any studies linking kratom use to ALS but I'd hate to know my consumption of it could have triggered something wrong in my body after the American Kratom Association touted it as a safe, life-saving supplement. Some kratom companies support ALS.org and other associations but I'm wondering if there's not some sort of link.
 

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If you did have lead poisoning it isn’t ALS but heavy metal poisoning is an als mimic that is treatable
 

abal115

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Hi all. Hope everyone had a nice Thanksgiving. No diagnosis of any sort yet but I seem be continuing to lose weight, hands weaker, and developing drop foot. Still driving but tough getting my foot from gas to brake. I saw a Lyme literate doctor who thinks I have a combination of factors mimicking ALS and not actually that but I'm not sure. Is it typical for breathing difficulty and swallowing issues to begin while I still have pretty full use of my hands and legs? I'm walking awkward and still twitching all over but I can still run, stand on heels and tip toes, etc. But I get short of breath way easier than before and tougher breathing in general. I choked on my food pretty bad at IHOP from gag reflex. That's like the fourth of fifth time it's happened and triggered by having to much in my mouth at once, and swallowing was tougher. Would that be typical if I have pretty full use of my limbs, although weaker and more fatigued?
 

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LLMDs are not a recommended resource because what they do is not a reflection of the available scientific evidence. There is a ton of territory between ALS and Lyme, and the most likely scenario that you are facing is that whatever anxiety, mood, focus issues that you were taking kratom for can also take a toll on your physical health, and vice versa.

A good PCP and possibly a counselor can help you sort the wheat from the chaff and address the roots of your issues. An LLMD that operates on a cash basis has a vested interest that does not necessarily align with yours.
 

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Has your developing drop foot been clinically observed? How do you have drop foot, yet can stand on your toes and go back on your heels? Your symptoms do not correlate at all with ALS onset, hence my questions. What has made you focus on this disease when there are many, many more plausible issues?
 

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You should not be driving as you won't be able to respond in a sudden situation.
 

abal115

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The foot drop hasn't been clinically observed but just looking in the mirror, you can see it droop it I raise my leg and let it rest. I have to lift my foot a lot more to hit the brakes too. My left foot kinda stays on the ground longer when walking, no dragging or limping but not acting the same as right foot. I suspect ALS mostly due to my exposure of lead or other toxins potentially causing it and how my symptoms line up in almost every way. I've atrophied all over, my legs muscles having lose their tone and all. Still seeing and feeling visible fasciculations consistently day in and day out. My clothes and shoes fitting bigger. Neck has shrunken. My shoulders are noticeably bonier. Tongue has changed shape but I still speak pretty clearly. I had even noticed episodes of inappropriate crying before a lot of these other symptoms. My grip strength seems to have weakened with use of video game controllers and pens not coming as easily, but still doable so far. Just far more fatigued in general. And now with it being harder and breathe and swallow it seems like I have a lot of the telltale signs of ALS or a VERY close mimic.

And thankfully my foot situation still is not bad enough to where I can't respond quick on the road but I will monitor closely.
 
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