Researching ALS After EMG

Hey all, Now I have gathered myself back after scouring the internet today I feel better. A few people on here have e mailed me or PM'd me with a new fear that after SEVERAL EMG's could you be dx'd with ALS. I knew exactly what site this was coming from and I pretty much knew the person it had to be saying such a thing. So I did my own research. I dont believe the person is ligit. They state with widespread twitching- and 7 EMG's that were clean they were FINALLY dx'd with ALS. (GOD FORBID ME IF THIS IS TRUE but it doesnt add up). I have seen this person post on the other site NUMEROUS times. This person was ALWAYS discredited and was made out to be a very bad hypochondriac, neurotic person or someone to cause problems. Everything they said on that site was scary and negative. Nothing positive or to reassure someone. There was a group of them. Ironically , the person that now says she has als after 7 clean EMG's was friends with someone whom said their brother had als and i believe it was exactly 7 clean emg's as well.This was said to be with widespread twitching. That person with the brother was always discredited too. Nothing added up ever. People always questioned her and she was always defensive etc. When people would celebrate clean emg's she would scare the mess out of them w/ the story of her brother. I hate to break all this out but it was going to eventually surface on the forum. Via the pm's and e mails I have already received. Take note though it is TRUE if you have BULBAR ALS you just have UMN signs at the beginning which do NOT include fasciculations. LMN signs are what the EMG picks up and catches the problem. So people whom start out with NO TWITCHES but maybe say slurredd speech, choking etc.. the EMG is NO GOOD and you will hear or read CCF's neuros say for UMN and EMG is not a diagnostic tool but a examination is. I still believe if you have had clean EMG's after fasciculations then you are clear. I just cant put these two random very close coincidental stories I read on a forum and believe that after MULTIPLE EMG's they FINALLY said "Oh Yeah you do have ALS" and these were supposed top docs whom "missed it"...I just dont think so.So I thoughtI would clear the air here.I know after reading and thinking about it after I freaked out first it makes sense to me that this story just doesn make sense.Warm Regards, Lovely

Of course I know what person you are talking about and I share your oppinion..As I told you, I dont believe her too. And mainly - one member told me that she was using different nickname and telling different stories, so I think her story was fake. The one with her brother, Im not so sure here.Anyway, we could maybe be open to possibility that she was really telling truth /which I doubt/..in that case I would be really ashamed for making that accusations. My personal oppinion is that she wasnt DX, just wanted to show everyone she is not hypochondriac and wanted to be taken seriously...IMHO she has really some mental troubles, as one member mentioned.These cases, when people have clear EMG and later develop ALS, are pretty rare and Im with you that those two stories are bit strange...But one thing I disagree with you - the people there are very supportive and reassure scared newbies. There is very knowledgeable person called "wright" who is scientist and really helps.

Ohhhhh no no dont get me wrong, people there for the most part have been a GODSEND to ME! Esp, WRIGHT, Gramp AL, Patricia etc. They have all told me to move fwd and get past this fear. Please dont think I am speaking for all . I am just saying there were a FEW over there whom really would scare the newbies and play the role of "I feel sorry for you and your ok but let me scare the BEEP out of you... know what I mean.Wright, I have never seen be wrong, I took in every thing he has told me and explained to me as gold. but do you understand what I am saying about the "other weird names" that were backing eachother up and now have been deleted and or dont post anymore etc. How ironic and weird would it be you think your suffering from *** and your going to fly out to wherever to meet someone who's brother has it and meet that person. I would think that would be far from your brain. See what I am saying??? I am glad you agree.LovelyStay on this side of the fence Savanturn dont fall for that other...Your doing well.

Yeah, I misunderstood you, I thought you were saying people there say only negative and scary things I agree absolutely with the names you write... I believe it is possible to happen something like the story of that girl...but I dont believe her presentation, especially if she was blamed of making different usernames and play another person.

I don't even want to see this site...haha... I agree though...maybe that person is so unhappy about not being diagnosed with that dreaded disease that she wants to pull others into her negative universe... The sad thing about the internet is you never know who is typing on the other end, it could be someone who found this site first and decided to prey on our fears...there are people who are sick enough to do that.But I think you can safely say that if you're twitching all over your body and the EMG is normal...then you probably don't have anything except good 'ol BFS... And you're back in that 1/100,000 statistic... keep praying for me though...I haven't had my EMG yet

I would say further...Read the nutshell, and most doctors will say that "clean clinical, widespread fasciculations and no weakness" = no **S. The EMG is used to CONFIRM, not to DISCARD. I have seen that in USA everybody has to cover their asses. Here in Europe, pff, most of us are dismissed in 30 minutes.So, you are far from the statistics... I also did not have an EMG, and, know what? I will not have... I am getting better (though today is a bad day), and come one, the disease we fear does not present like that. There has to be weakness, real through weakness. If I see something else strange happening, ok, I will go back. But entering the vicious circle of doctors, and more doctors and more exams for something that is not bothering me that much.And regarding the 7 emgs, I saw this forum. So, either it´s a lie, or something was probably VERY WRONG with the person for him to keep having EMGs. I really don´t believe this post/story. And even if it´s true, for the doctor to agree with 7 emgs, something must have been wrong.Well, if I end up being the one here with the dreaded disease, at least people will be able to say "but he did not have the EMG" Mich

I am glad you guys saw and felt the same as I did....7 EMGS omg, I hardly get get one..Actually mine sorta came easy beacuse I think my neuro labled me as a "NUTCASE" from day one when I was in total panic huge and pregnant in her office making a fool out of myself and questioning all the testing they were doing (neurological test) then when I called the second time they threw me to the EMG and before she even stuck the needles in she looked at me with a firm face and said "YOU DO NOT HAVE ALS"...now here we go to confirm that lol Besides, I want to know WHAT insurance would allow SEVEN EMG's within a YEAR!? Whew. Wow. Good insurance. I hope you all are ok and dont believe the post as I did not. At first I did..then I just kept thinking to myself...no way. If so and I am writing this and this person DOES have it and had a horrible experience w/ someone unexperienced and maybe some quacky doctors then GOD PLEASE FORGIVE ME and COMFORT that person but something just doesn't smell right to me? Fresh halibut anyone? Lovely

One last comment I'd like to add is I was on some forum once and a guy who had the disease was like "Listen to us...the real experts on ALS..." one thing I have to say is if anyone says anything to you like that...DON'T LISTEN... the people who have it (and the people who don't) probably couldn't even read their own test results, much less call themselves experts on it...Just because someone has something doesn't make them more able to give you a diagnosis...I know several people with cancer (the disease we should really worry about eventually getting) and I know that none of those people could tell you whether or not you have cancer... a couple of them didn't even know they had it until a Doctor found it doing an examination or procedure for something else!A doctor yelled at me a few weeks ago for thinking zebras when I hear horses...or something like that...I want to practice medicine one day..and I really need to learn that... In a lot of the lectures I've attended by admission counselors for med school they've used cars as a metaphor for the way doctors should view the function of the human body... let me try to come up with a sensible comparison...If someone told you that after your car catches on fire the speedometer always won't work anymore after the explosion.... well what if you're driving down the road one day and your speedometer stops working... would you assume your car is about to explode? Or would you think maybe the needle is just broken... I hope that makes sense... that we shouldn't always assume the worst disease when we have one symptom that could indicate in my doctors words "a whole laundry list of diseases...including kidney problems" ... the neurologist I saw said (with a smile) "man your muscles must be mad at you for not exercising anymore... you should really start running and lifting weights again"One last thing....I don't know how many of you feel about religion, but I am a Christian... and I've come to realize that I should stick more closely to my beliefs in that if we do have some kind of disease... God is still on his throne... I dunno if I'm allowed to say that on here, but I just want to add that I believe that...thats why I like this board so much...everyone is going through this in their own way, but we lift eachother up...and I hope this has in some way lifted you up... even though it was very scattered and disorganized, but I wanna be a doctor..not a writer

Yeah I agree Here in Europe doctors really dont need to cover their asses, that is what I really dislake on USA - you do something absolutely logical but somebody accuses you and take you to the court.The same with EMG - I doubt I would get more than 2 in one year. Especially that girl has them all clean, so who would repeat them?

What makes it even more unbelievable is that in the US you risk losing your lisence for ordering tests that aren't needed... It happened to a PA in my town not too long ago... he was profiting from the tests...