This is one of your first posts on this forum:
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)
Progression over time.
Testing to confirm includes:
EMG & NCV
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))