Questioning an Undetected Injury on EMG

[TheBobinator]

I feel bad for posting this, but I feel like eventually someone will stumble upon it anyways and ask about. Also, I'm hoping maybe someone knows more details about this story and can shed some light on what was going on. I think the thing I don't get here is how it could have been missed on an EMG. I've always assumed that an EMG rules out anything bad, especially if twitching was already present.Again, sorry for any concern I am causing, just feel like this needs to be out there for discussion.

 

[EmmyCee]

I dont understand why that story is scary. The poor man said that he knew something was wrong because he noticed marked weakness...he himself said he was unable to do things that just the day before he could do. Yes, the first neuro dismissed that weakness and we don't know the results of his first EMG. He also said he had trouble breathing on his back. Likely he had UNM signs before the LNM signs (as in bulbar, and weakness all over) which is why maybe his initial EMG didnt pick up anything. He also had trouble breathing. Why would you share this again? do any members here have weakness all over and breathing difficulties? Geeze, this is tiresome. Take care guys. I will check in every now and again, maybe for my yearly BFS anniversaries (one which just past, 6 years and counting) but I think I need to take a break from this forum.

 

[BobJazzy]

You feel this "needs" to be out on this site for discussion? The guy was in his late 60's early 70's and had noticeable weakness from the start. This kind of post just makes me scratch my head as to why you felt this needs to be on here.

 

[JoshSon]

I made a rule to myself after a couple of months into twitching to never again visit an ALS website or read a story related to ALS even with a gun to my head and I will not break my promise now.But I have always been wondering why people keep visiting again and again websites related to a terrible disease for which they were not diagnosed. I mean there must be some psychological explanation for people whom after several months of twitching decides to ignore everything their doctors have said and for the zillion time jump on visiting the scariest medical website on the web. Is it the eternal quest for perpetual reassurance, a masochistic behavior or what?There are 7.5 billion humanoids mammals bipedal homo-sapiens on this planet spread over 5 or 6 continents. So of course out of this huge number, rare and uncommon medical cases must surely exist. With the internet it’s even worse since no one can really verify all the stories and check every patient’s medical record. I think this website contains enough information, neurologist opinions and scientific studies made by respectable institutions to give a fair picture of the true risks of having a dreadful neurological disease despite good clinical and electrical exams, which outweigh a random story posted by some dude on Internet. Medicine is not mathematics or physic and exceptions to the rule will always exist, as the physician William Osler said: “Medicine is a science of uncertainty and an art of probability.”So what’s the purpose of spending hours on internet trying to dig those exceptions? It’s easy to find odd stories, just by typing on Google something like odd ALS symptoms, weird creuzstfeld-jacod signs, bizarre prions disease risks etc. and we’ll be sure to be directly infected with hypochondria and cyberchondria. Brain tumor that starts with a flu and no headache at all, Pancreatic cancer after a slight abdominal pain and no jaundice etc., every tinny 0,01% medical exception and oddity is sleeping somewhere on the web waiting to be dig up.I think people should learn to accept uncertainty. 100% reassurance doesn’t exist and will never exist. Dying and becoming sick is always possible and intrinsically related to our nature of being humans either we believe in an afterlife or in an eternal oblivion. Like someone said: “The mistake is thinking that there can be an antidote to the uncertainty.” to which Horace could add “Who knows whether the gods will add tomorrow to the present hour?"

 

[princessshelia]

I'm with Emmie. I think I need a break. In a way, I'm glad I read that awful story, because it's made me realize that I need to step away from this forum, as helpful as it's been. I simply cannot read about ALS day after day. I want to bring more joy into my consciousness. My son told me I need to get to the point where I say, "I don't care what happens to me." He's only 17! But I think he's onto something. Michele

 

[MarioMasher]

"Hey, here's something that is horrifying and that I shouldn't have read. Why don't you other people with health anxiety experience that too?"

 

[TheBobinator]

Wow, I guess that was insanely idiotic on my part. In the past when I've run into something like this (i.e. the Walton study) I've found something in the archives here that provides some reassurance, but that is no excuse. I apologize and will delete this post if people think that needs to be done.

 

[GlowGreen]

For those that haven't read it (sort of like trying not to look at a car crash) let me summarise it for you...Twitching without weakness isn't sinister. This poor guy had weakness, serious respiratory weakness.GlowGreen

 

[Gloria123]

GlowGreen,I like the car crash analogy. I saw the post, told myself not to open it, opened it, saw the link, told myself not to open it, opened it, and lo and behold, even after 2.5 years of twitching, it freaked me out. I don't suggest anyone reads this.This guy is not us, his respiratory issues were his primary issues, we don't know the full picture, his initial EMG results, etc. Try not to read and definitely try not to find meaning in the things that correlate with us (clean EMG, and twitching). Look at the things that do not correlate with us to differentiate our stories with his.Mitra

 

[TheBobinator]

Just to be clear, I was googling "benign fasciculation with cramps", to see if I could do research on what the progression of BFCS typically is, and this was the third hit that came up. It wasn't clear until I clicked the link that this person had als. I actually thought it was going to be a story about someone with bfcs from the quick description in google, which is guess was a pretty stupid thing on the surface. It was kind of a car crash thing for me to. I freaked initially and thought it was maybe posting it for discussion, since it was so easy to stumble into. It seems like in other exceptions like this, people had some more reassuring interpretations of the accounts.

 

[LostLamb]

Emmie you are one of my hero's on this board, your posts shine light in some of my dark corners. Understand the logic of you thinking about leaving but just wanted you to know your words have kept me sane many times. GlowGreen thanks for the summary. I will refrain from this link. Every study t I ever do has outliers, nature of biological systems. It is not these that I look at it is the whole picture. Anyway your summary is plenty for me, no need to know the gory details,and I trust your interpretation.Helen

 

[RedFalcon]

Oh how I wish I didn't read this.I'm 28. Did 2 clean EMGs. Did a sleep study and was put on CPAP due to apnea.Now, I'm all scared thinking I'm the same as the man in this story. I want to call my neuro.

 

[Keiran]

Hi RedFalcon,I know the story is scary. It scared me to hell as well, especially since he had clean EMG's and a clean clinical exam. But please remember that respiratory onset **S is the rarest type of an already rare disease and that it almost exclusively affects people between 60 and 70. The odds that someone at your (or my) age would have it are astronomically low. In addition to that you have been diagnosed with sleep apnea, which is not uncommon among people here on the forums: and none of the people diagnosed with sleep apnea has **S. So, the more plausible connection between your twitching and your sleep apnea is that either both are caused by anxiety and stress or that your sleep apnea is the cause (or one cause) of your twitching (as you know, twitching can simply be caused by lack of sleep).

 

[UFgatorGuy21]

This is ridiculous. This is why I don't watch the news. Let me see all the bad things that occurred today! Stuff like this shouldn't be posted on a forum for folks overcoming fears of dealing with something significantly more dibiliating... and something I firmly believe none of us have!