Different kind of twitching..new for me

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Blizna

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Hi,
I would be glad for anyones experience - last few days I have annoying hot spot on my left foot (along with tendons snapping and joint cracking) its new for me.
What worries me is that its almost nonstop - like twitching for many minutes, then nothing, later again and again for a few days.
Anyway I ave question related to the twiching itself - up to now I have "classic" fasciculations, I mean sporadic twitching of muscle fascus every 1-4 secs. But now its different - its like vice versa, now its like continuous contraction that is being interrupted rapidly. Sometimes its pretty fast so it produces buzzy feeling...anyone feels twitching like that?
Especially for wright, I know you think Im fine, but this changing pattern is worriyng me a bit, since I have never had hot spot in my 1,5 years of twitching and I have never been twitching on my feet.
 

wright

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You know as well as I know, that "hot spots" are completely normal with BFS, so I'm a bit confused at your question considering you already knew the answer.

You will never be at ease until you get another EMG, so my advice to you: GO GET ANOTHER EMG!
 

Blizna

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Wright, I have finally deciced and ordered second EMG in almost 3 weeks.

Anyway, I repeat I have never had hotspots during last 17 months and now it is changing. I have them much more on my feet and unfortunately I dont know about any strenght test how to test those muscles on the side of the foot. Its twitching, buzzing, its like pins n needles, but it is visible twitch.
 

Al

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Blizna, hot spots are not a symptom of ALS. I don't think a second EMG in 3 weeks will show any difference unless the first was done incorrectly.

AL.
 

Blizna

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Al, I dont understand now, with ALS twitching is more on less constant, right? And that "hot spot" I have now, but never had before.
My first EMG (needle part) was done only in muscles, in the leg muscle and in the arm, however those were affected by twitching 2 months before the EMG. She told me, with ALS there would have been changes months before any symptom would appear.
Well, I could say "Im not affraid, Im twitching for 1,5 years"...but Im coward and freaked out pretty much.
I have written it long time ago, I just adore your strenght, you all DXed who are helping on this blessed forum. I doubt I would be able to the same.
 

rose

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Blizna,

This is one of your first posts on this forum:
Hi,
At first - I dont think I really have ALS, but people who are struggling between DX and little worries keep me here with you.
Im almost 24, having fasciculations for more than 17 months, except joint cracking I have no other symptoms. Im bothering neurologic ER every 3 months for immediate exam- all is normal. EMG done 11 months ago was clean. My fascics arent constant, I got sporadic ones a few times per minute.
What is causing a little worry is my jaw and probably chewing muscles - everytime I chew the muscles get tired quickly..Thats it - its not new for me, I noticed it year ago and so I think with ALS it would be much worse now..
Anyway, I would like to know your experiences..

My second question: does any PAL here noticed joint cracking? I have read that lack of muscles cant cause it, others say, it can.


Blizna, one of the first symptoms of Myasthenia Gravis, other than perhaps a droopy eye, is tiring when chewing. Myasthenia does not cause muscle twitching, but you could have benign fasciculations and then also perhaps be starting into the first stages of myasthenia. This is much much ((((MUCH!)))) more likely than you having ALS

Here is the offical standard called the El Escoria used in reference to whether a person might have ALS or another of the motor neuron diseases.

It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.

Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology


Notice how there is no mention of fasciculations... but it does talk about progression, and you yourself feel you don't have progression.

The "hot spots" you mention are not a sign of ALS either. So, you really aren't having any warning signs on the horizon, and additionally, you're very much younger than virtually anyone that develops a form of ALS.

I was hoping that you would read my thread entitled "first symptoms" But you've not responded on it, and of course I cannot know if you've seen it or not.

On this particular thread, BethU posted a link to a benighn fasciculation online support group, similar to this forum.

This is what BethU says about this website: It has valid information, and repeats what we keep trying to tell people here: Benign fasciculations are much, much more common than ALS, and BFS (Benign Fasciculation Syndrome) is a "real" diagnosis ... the syndrome has a series of symptoms that match what many "worriers" on this forum complain about, whereas ALS symptoms do not.

This is Planninguy's comment: I have read some fo the BFS information from the support group, and if it is the same source they even have posts regarding tongue twitching, and how BFSers (I hope that works ) do get them. There was even a couple of neat posts from individuals who had tongue twitching for years, and no other worries.


Blizna, I didn't post the actual link that Beth provided, just because sometimes there is quite a delay in a post showing up if it contains a hyperlink as the moderators need to approve it first.

Also, keep in mind that EMG's are used to determine if there is a pattern of denervation/reinervation. Although fascicualtions show up, the primary purpose of this test being done is not to try to figure out the cause of someone twitching. Most people that are found to have ALS have the EMG because of the reasons listed by the El Escorial. (Weakness, Atrophy, Hyperflexia, Spacity,Progression over time.

Please do yourself a favor, and not allow yourself to stay so focused on a terrible disease that you don't have the symptoms for. Go check out the website that Beth provided the link to.

Good luck to you! You should have a long life ahead of you, don't waste time worrying about things that probably will never happen to you. Don't borrow trouble. ((hugs))
 

broodjeaapspeciaal

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Blizna,

[..]

Quality post. Blizna, stop drooling on something that you dont have. Why would you believe a 2nd EMG if you didnt believed your first EMG? taking a 2nd EMG is the ulimate proof that the anxiety fully controls you.
 

Blizna

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I believe my first EMG, I was only worried it was done too quick and with just 2 muscles (needle study, NVC has more).

Right now I have panic attack, I have discovered on my foot there is almost constant multiple twitches that I cannot feel. Im wreck now, totally down, because it is changing and the twitching becomes to me more "hot spoted".
I believe its BFS..well, I want to believe but I cant, its too strange. I have no calf twitching like the most of BFSers.
I dont want to vent here all my thoughts, its disrespectful to you who are already diagnosed.
Now the anxiety is insane, I can hardly swallow and run out of clonazepam. No way how to get it today..this will be long terrible night...i(ts 48 minutes after midnight here).
 
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