ALS Diagnosis with Normal Exams/EMG's?

[FreddieTheFox]

Hi all,I really need good info now. I posted here something of being on a bad site and read of people having fasciculations as als-onsetSomeone PM'ed me and told me that this person read on a als site that there were many people initially had normal exams and EMG's and were later on dx with ALS. I can't figure this out anymore. Why do doctors say we are fine if there are many people with clean emg's that later on are dx with als. Can someone help me please with this, please be honest !Don't won't to scare anyone but if those stories are true!? Thank you a lot for answeringFreddieTheFox

 

[FreddieTheFox]

I've been on the site as well and indeed read stories of people with even 4 clean EMG'show is this possible, I can' take this anymore

 

[DonJose]

Of course what Aaron says is right. The anxiety once we read the "other stuff" takes us away. Thanks Aaron for bringing us back to reality.Linda

 

[cindyandco]

FreddieTheFox: PLEASE, stay away from the als forums. They will do nothing to help you. If you need to search further, as we all have before, then go back to the beginning of this forum and read the older posts. They are VERY VERY helpful. Believe it or not, there are people out there, who due to bitterness, or perhaps just plain meaness, or a need to find company in their suffering, will make statements that are miscontrued. Please believe me. I know so well the acute fear that traps us when we are searching for answers. But, stay away from the also forums. You will not find your answers there.BlessingsCindy

 

[inzTwoToneTunes]

Fredrick,Please pm me and tell me who said that to you. I got 10 bucks says I know who it was.Secondly I have tracked down all those "clean emg still als" stories. The key word is clean. Nobody and I repeat NOBODY has ever had a clean emg and still als. Let me explain: To be diagnosed with als you have to show signs of the disease in 3 limbs. If an emg comes back abnormal or shows signs of dennervation in just one arm or one leg they clinaclly can't say it is als yet but will not rule it out either. That is where the diagnosis of exclusion comes in. This happens very rarely. You get a person who shows als in an arm but the neuro won't diagnose him yet even though he is 99% sure the patient has als. The patient did not have a emg that did not give enough for a clinacal diagnosis for als but they did not have a clean one either. So in the process of ruling out everything eles the disease becomes iron clad- meaning showing als in 3 or more limbs. That is why the exam is more important then the emg. If someone walks in with real clinacal weakness in a hand or leg AND twitching in that limb only they suspect als right away. You don't rule in als you rule it out.The guy with 4 "clean emg's" was just like that. All emg were abnormal but defienately not "clean" or all clear of als. He just did not get a for sure diagnosis but they suspected it from the beginning. I will always remember what my second neuro said. He said "Sometimes very very rarely we suspect als but it turns out to be something else, but we never suspect something else and it turns out to be als". "We know als when it walks in the door".Hope this helpedDD

 

[inzTwoToneTunes]

Fredrick,Please pm me and tell me who said that to you. I got 10 bucks says I know who it was.Secondly I have tracked down all those "clean emg still als" stories. The key word is clean. Nobody and I repeat NOBODY has ever had a clean emg and still als. Let me explain: To be diagnosed with als you have to show signs of the disease in 3 limbs. If an emg comes back abnormal or shows signs of dennervation in just one arm or one leg they clinaclly can't say it is als yet but will not rule it out either. That is where the diagnosis of exclusion comes in. This happens very rarely. You get a person who shows als in an arm but the neuro won't diagnose him yet even though he is 99% sure the patient has als. The patient did not have a emg that did not give enough for a clinacal diagnosis for als but they did not have a clean one either. So in the process of ruling out everything eles the disease becomes iron clad- meaning showing als in 3 or more limbs. That is why the exam is more important then the emg. If someone walks in with real clinacal weakness in a hand or leg AND twitching in that limb only they suspect als right away. You don't rule in als you rule it out.The guy with 4 "clean emg's" was just like that. All emg were abnormal but defienately not "clean" or all clear of als. He just did not get a for sure diagnosis but they suspected it from the beginning. I will always remember what my second neuro said. He said "Sometimes very very rarely we suspect als but it turns out to be something else, but we never suspect something else and it turns out to be als". "We know als when it walks in the door".Hope this helpedDD

 

[jdaddy69]

If you scower the net looking for bad stories you will find them. Stories like 'I ate strawbeeries and develop leporacy' or I stubbed my toe and had to have my leg amputated.'If you go to a neuro and he gives you the clear and you keep dealing with crippling fear you really need to seek help - and not from a neuro. Anxiety and being a hypochondriac are very real - I have heard talking to a councilor and getting the proper psychological help can really help. ALS is a very very very rare disease characterized by extream weekness (aka cant do reguar everyday things). It can really ruin your life to obsess about rare deadly diseases - the soon you can get the proper mental hlp the sooner it is to getting back to normal and leading a normal life.Good luck