Exploring Nutshell Misinformation

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santos271

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Hi all:Something that was said in the nutshell and that has been said over and over again here, is that allover random twitches are not indicative of ***. The nutshell specifically calls out a quote regarding that subject that it says is completely untrue and taken out of context. Why then is that misinformation still out there? I myself have seen several statements on medhelp saying the opposite - one in particular plays over and over in my head and was the initial cause of my worry - "widespread, profuse fasciculations are the hallmark of ***." THAT horrible line is what sent my twitches into overdrive and brought me here. (I could just strangle the &*%$ who wrote it.)If it's untrue - and I'm glad as hell to hear that it is - why is there so much misinformation on supposedly reputable websites (like medhelp) perpetuating it? And when the nutshell says it's "taken out of context," what is the correct context? I am the very first to admit I am particularly sensitive to suggestion and things I read about health issues, (aka "a hypochondriac"). Even that article by the doctor in the "articles" section of the website is not one that I find very reassuring. First, he seems to perpetuate the "tongue twitches fear" by mentioning a call he got from a neuro friend saying that those are something to watch out for. He also says more than once that if he had to do it all over again, he would still not go to a neuro to get his fears confirmed/denied. For someone like me who's too chicken to see a neuro - that's absolute confirmation that I've made the right decision to just stew in my worry. Anyway, lots of babble, but I really just wanted to know if anyone could shed some light on why the *** information that's out there is so misleading, even from people who are supposed to know better.Thanks,Joanne
 
Hi again Joanne!Yes, I also read that statement and it was one of the comments that really heightened my anxiety also! I think your post was very interesting, I sure would like to know the answer to your question as well.Warm regardsSandraWe are fine, we have BFS!!
 
The main issue to understand I think in the difference between ALS and BFS is that the initial symptoms are very different. With ALS, the main initial symptom is a profound and clinical weakness. With BFS, the main symptom is the twitching. With ALS, any twitching is found after the muscle weakness would be obvious to any neurologist. The head to toe fasciculations of BFS are benign because they are not accompanied by clinical weakness. When we are in the midst of severe BFS symptoms, we often really do not have the perspective to be able to see this huge difference and it can be very scary. The main thing to know is that to a neurologist it is very obvious that these are not the same condition and you have to trust their judgement. That's how I understand it anyway, so I hope that helps. Best advise; go to the neurologist, trust their judgement and DON'T GOOGLE!Also, twitching in one paticular area of the body, be it the tongue or elsewhere, as long as it is a peripheral nerve is not indicative of anything. I have had twitching from head to toe, including my tongue, and all of tests indicated BCFS. Take Care,Sir_Trouserz
 
The fact is that people with ALS are known for rapid, often violent, profuse and widespread fasciculations. At this stage the disease has spread to many parts of the body, and they are often extremely weak or even bedridden. In ALS, the muscles are dying; they've been cut off from their nerves, and they are fasciculating in a sort of muscular death throe. Widespread fasciculations have and will always be (so long as the disease exists) a hallmark of ALS. HOWEVER, bodywide fasciculations from a person without clinical weakness are not hallmarks of ALS. No neuromuscular specialist in the world will claim otherwise. When we see quotes like this on websites, we are seeing information taken out of its medical context. Most of the time, online docs are not thinking about the fact that they are corresponding with someone who is in medical anxiety hell. And they probably don't care. The internet is very impersonal. Bottom line, when ALS makes you twitch, it's killing your muscles, which is is a process that doesn't take overly long. If you had bodywide fasciculations due to ALS, you'd be experiencing some pretty rough going right now.And I can't even talk about the tongue anymore, but I'll give you a 100% foolproof method of determining whether the "twitches" in your tongue are caused by ALS. Read any sentence in this post aloud to someone else and ask them if you are slurring your words like a sailor in the middle of a 3 day shore leave in New Orleans during Mardi Gras. If not, ALS is not causing the "twitches" in your tongue. In other words, your tongue isn't dying.I hope the tone of this post is not too rude or abrupt. Sometimes I can't tell. But I'm concerned because I've spent my entire Sunday in a series of meetings and am not in a particularly good mood. About 5 minutes of meetings is all I can stomach without becoming violent, and I had to hold it in for 6 hours today because they don't allow violence in the Methodist Church. :oops:
 
You weren't rude or abrupt, jeliota. Both your and Sir_Trouserz's posts were very helpful. I hope I didn't sound like I was trying to second guess anything anyone's said here - that wasn't my intent. I was just trying to understand the seeming disparity in stuff I've read elsewhere and how those other sites could post statements like that didn't seem to be correct. Yes, they do tend to scare the hell out of people and you're right - they honestly don't seem to care. Both your posts helped me understand this better, though I really want to get on that medhelp board and kick a little CCF neuro @ss. And it's been weeks now since I've given up googling any topic that has the letters A-L or S in it. :) Thanks again -Joanne
 
They shouldn't even have a site where they answer serious medical questions if they are going to be so careless and vague. I'm in the mood to whip butt, too. Want to meet me in Cleveland?Poster: Hi, I'm six. Mommy says my toes twitch when she tickles them. Isn't that funny?Doctor: Well, obviously, I can't diagnose you without seeing you, and I can't say that you don't have ALS because certainly twitching is a part of ALS, but I would certainly recommend seeing a doctor if you're worried. NEXT!
 
Gelianna~~ I would just like to say thanks for posting that, it really comes at a good time for me! I've been having somewhat of a bad day with the tongue twitching, and it really helped A LOT to read what you said about that. It doesn't take much to have a bad day with the tongue twitching, if it only happens a few times, that is enough to send my anxiety into overdrive!! I was pretty good during the day, but in the late afternoon when we got home to watch the Superbowl, I had eaten somewhat of a large meal, and had a wine cooler, and then my tongue started feeling a little poppy again. The weird thing is, I was generally having alot of tremor type feelings in my neck again, and sort of down my back. Also, it was the weirdest thing, we were jumping around getting all excited for NY, and I noticed after I did that, I was doing that really shaky thing in my cheeks again. Like the adrenelin going or something was really causing my twitches to fire up. I showed my husband, and he was like "Yea, that's weird, your cheek and lips are twitching"....and it would happen not when I would relax my face, but when I smiled. So, when I was trying to cheer for the Superbowl, it sucked cause my symptoms were making me nervous. Anyway, then I had a few more tongue twitches after that and still now a bit. Do any of you guys notice your symptoms being worse if you drink alcohol? I only had one wine cooler, but I would have thought that would help my symptoms, not make them worse. Again, thanks so much, I was able to read those sentences without too much trouble, so hopefully I'm ok! We went to the show tonight, though, and I was clearing my throat alot during the show, and so I worry that is another bulbar symptom. I know I'm going to have to go back to my neuro soon, and I'm so worried that he's going to be concerned about the tongue twitching. Talk to you soon! Thanks again, Val
 
valger, your symptoms sound completely benign, but extremely annoying, to me. The tremors and the tongue twitching would drive me batty. If your neurologist hasn't given you any medication to help control your symptoms yet, you might want to go ahead and make an appointment with him/her again and ask for some help. There are things they can try that might help the twitching and quite a number of things that should help the tremor.
 
Truthfully I've never been big on taking any kind of medication. If I had a serious illness, and knew that it wasn't just anxiety, I would then take meds in order to control my symptoms, but if I know that it's just anxiety, then I would rather work on it myself than take anything for it. I'm going back to the neuro soon, after my second sleep study. I remember back when I first started having heart palpitations, I tried different meds, but ultimately gave them up, realizing that at least for me, they eventually all made my symptoms worse. It's hard to find medication that doesn't have some degree of side effects, and I'm usually very sensitive to that. I don't even really like taking vitamins. It's like, even sleep medication, will eventually, if you use it long enough, have the opposite effect of what you are taking it for. My Mom used to take Valium for anxiety, and she had a really tough time getting off of that. You had mentioned that those with als will have sometimes violent twitching? I had always read, so far, that the twitching with als is usually the kind that you can hardly feel. That is why I felt better when I would have the big thumps, thinking that wasn't indicitive of als. I'm sure it can all vary, as my neuro said months ago. Everyone with als probably starts off differently. I don't think it's always weakness and atrophy before twitching, and unfortunately that is pretty scary for those of us on here! The other thing that seems to be up in the air is how long it takes until you should feel more comfortable that your twitching is benign. I have read six months, and I have also read one year. Although, it seems like if you read on some als sites, there are people who take years to get diagnosed. All very confusing. Anyway, talk to you soon, Val
 
Hey hey, i've seen that EXACT statement on a MEDHELP FORUM however, HALLMARK means "THE END" basically the last thing...PROFUSE means RELENTLESS HARDCORE ALL OVER- by this point you would w/out A DOUBT know you had ALS. Sean's Neuro told him WIDESPREAD TWITCHING HAS NEVER AND WILL NEVER BE A SIGN OF ALS without DEFINATE WEAKNESS!!!!! If you search furth on medhelp say google "medhelp, widespread twitching usually not ALS" you will see a different picture!!!!! I promise ;)
 

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