Sorry, but can someone please address this US Neuro article

Ren_in_black

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Hi everyone, I have read the stickies. In fact, several times. They are the only things keeping me sane right now and I appreciate them. I didn't want to post here and be yet another crier of wolf. But I can't get my head past this article that appears to be completely reputable.

FYI I'm 46 years old and noticed a consistent twitch between my forefinger and thumb in my left hand about a month ago. After about a week I noticed it wasn't going away. (By the way, I have not changed meds or exercised vigorously, I have gotten plenty of sleep - before the twitching of course - and I even cut out caffeine to see if that would help, but it didn't.) I quickly saw my PCP who gave me a referral to a neurologist. But the soonest I could get in is in another month from now.

I can't trust my perception of weakness or atrophy. I assume my non-dominant hand is naturally weaker and smaller. But I don't know. But there's no clinical weakness or atrophy assessed by a physician. So that's where I took the sticky notes to heart. Just twitching. The location made me nervous though because that is where split hand syndrome happens, and I know that split hand is pretty much a sure sign of ALS.

But what has disturbed me most is this clinical article which states: "In ALS, especially, fasciculation is often noted before patients recognize atrophy or weakness."

This is from 2015, a year after the sticky was written, if I recall correctly.

Can anyone please shed some light on this contradiction. Also, if there is still no weakness in a month when I see the neuro, should I demand an EMG if he doesn't think one is necessary?

Thank you all for your generous time.

Here is the link to the full article if anyone is interested: Complex Fasciculation Potentials in Amyotrophic Lateral Sclerosis - touchNEUROLOGY.
 

Nikki J

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Well the main point of the article as I am sure you realize is to discuss a particular emg finding. Even fasciculations caught on emg do not usually meet the criteria put forth here.

the article also states most twitches are benign- bfs

you are focusing on one sentence that is referring to a paper that was written almost ten years ago. I don’t believe it was a study on the phenomenon that had statistics x percent of ALS had twitches first.

anyway that has not been our collective experience here. It is mostly weakness first or weakness and twitches together

as far as your visit you should trust the doctor. I will add that some people who say twitching was first also report what is clearly weakness but unrecognized by them ( example turn key in door)
 

Ren_in_black

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Thank you Nikki. You are right, I am focused on the scary part. I appreciate your leveled perspective.

Just to make sure I understand you correctly...you say that some people who claim twitching came first actually had weakness but didn't realize it? As in your example, they couldn't turn their door key but thought it was a fluke or thought nothing of it?
 

Nikki J

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Yes and their doctor identified weakness on their first visit.
 

lgelb

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Yes, that's very true. Twitching gets attention but weakness is what's telling. If you can still do everything you used to, as I infer you can, there is nothing to worry about. This article does not relate to you in any respect.

A localized twitch can sometimes benefit from a drop of magnesium lotion, and, longer-term more attention to diet/hydration balance. You're in a warm climate, so it's not hard for electrolytes to get a little out of whack.

Best,
Laurie
 

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It is like saying "People with brain tumours experience headaches".
It does not say that every person who twitches goes on to develop weakness and ALS, just like very few people who experience headaches develop brain tumours.
Hope that helps.
 

Ren_in_black

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Thank you Nikki, Laurie, and Tillie for your responses. I really appreciate them, and your words will help me during the next four weeks of waiting.

One detail that I forgot to put in the original post was that my PCP ordered blood work to check about vitamin deficiency, etc., and those came back normal.

I have more questions but I will save them for the neurologist. If I learn anything that might be relevant or helpful to another person here, I will add it then. Thank you.
 

Ren_in_black

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Hi, I am providing this update in case it might help anyone in a similar situation as me: sudden onset of localized twitching in only one hand around thumb and index finger.

I saw the neurologist today and per the advice given here, went in with the approach of "here are my symptoms, what is wrong with me?"

After his clinical exam, he said he didn't notice anything that would concern him of a serious disorder. Actually the thing that seemed to get his attention the most was the high creatinine levels in my blood work which indicates a possible kidney issue.

Part of me was hoping he wouldn't order an EMG and convince me why it wasn't needed. But he did order one and an MRI. So that's another 3 weeks before I know definitively. I will update then.

Thanks again to everyone who shares their experiences and advice with us.
 

Ren_in_black

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Hi, I am providing an update in the hope that it may help the "just-twitching" people here as they wait for their EMG. My EMG was normal. I don't have the printed copy, but in my neurologist's words my EMG was "fine" and he told me he didn't see signs of ALS.

(Also, I misspoke above. He didn't order an MRI, he ordered an ultrasound that he did himself. I guess some neuros do that in order to get extra anatomic info that an EMG/NCS can't provide.)

To the mods, I hope my original post did not come across as argumentative, or that I was demanding an explanation. I was scared and seeking clarity from a source I trusted, which is pretty much only this forum. This experience has created, or perhaps just uncovered, some health anxiety and I understand that it is up to me to deal with that.

To the members here, the time and effort you put into this subforum are among the most selfless acts I've ever seen, and I'm deeply grateful.
 
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