I am reading all these posts of people who find an article and immediately think that is fits their situation. That is SO dangerous and even MORE wrong!!! Reading a completed medical journal article and assuming it fits you is like walking into the credits at the end of a movie and deciding you know what the film was about. If twitching were the sign of ALS then every person alive would have ALS. My brother has BFS and when he started all of this his neuro told him, "You have a symptom of ALS, but you do not have ALS." He went on to say that he had a symptom of ALS also, but he did not have it either. Twitching is a symptom, not the disease. Elevated CPK is a symptom, not the disease. Hyper-reflexes can be a symptom, not the disease. Those things mean NOTHING unless you have REAL weakness and atrophy. You sit at home and hit your knee and watch your leg kick out there and you are just sure that they are hyper. I knew that I was doomed when I did mine. I went to the neuro and he said, "Slightly hyper, but it is nothing." Went to my Internist he said, "Good strong reflex response." If you want to really be concerned, have weakness, atrophy and clonus, then get a little shook up. Clonus is when you hit the tendon and the limb bounces multiple times. When you see that there is an issue. Not necessarily ALS,but an issue. When we play doctor we are being silly. When I play doctor I only have ONE patient to base my diagnosis on. That patient is me. So that one patient has to have every disease for me to be a "good doc." Let it rest. Any neuro who would miss the kinds of signs that ALS brings is not much of a doc. A doc may not know it is ALS at first, but they will know something is amiss. Later...
Danger of Wrongly Applying Medical Articles
- Thread starter sabre
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MeaganGranger
Well-known member
Thank you very much for this post. I came across someone's new post on here last night about someone who had developed ALS years after twitching.... and of course, you guessed it, I freaked out. Your post and another from last night helped talk me down, and I find as time goes on when I do freak out its getting much easier to quickly and more calmly talk myself down. Its a battle everyday, yah know? I just have to keep reminding myself of the phrase, "When you hear hoof beats its almost always horses, and never zebras". I have been diagnosed with BFS by an attending professor of neurology at New York University Epilepsy and Neurology Center, one of the best places you can go for neurological care! I should have no reason to doubt her, and I know in my heart she is right.Thanks to you and the others for the constant reminders that here we are ALL OKAY. It is much appreciated.
Time is the only cure for the psyche part of this...Everyday that goes by and your body is unchanged, you know you are fine. I went to Lowes last night to buy a couple of outdoor chairs. While there I saw a man who I know had ALS. He was in a motorized chair. His hands and arms were atrophied and clawed. He was unable to speak. I instantly felt ashamed. There is no way I can understand what he is going through, yet I sat for over a year suffering from a disease that I really do not have. You had an expert tell you that you are fine...Take it and run. I am serious! Move on. That means that you will have to leave this forum to really get well. I left for a good while, until I knew I was strong enough to come back here and read the posts of "alarmist" and still maintain my sanity. Later...
Garym, sorry, but how can you write fasciculations, fibrillations and positive sharp waves are benign?! Their presence is confirmation of denervation. BFS is defined by EMG clean from fibs, psws or large MUPs.Except foot muscles, where every neurologists told me, its nerve damage common from wearing shoes 
Outlook1958
Well-known member
Great post indeed. We can even find this issue regarding articles, reports etc that seem to show the "simple truth" in other areas than medicine. There's so much information on the internet, and a lot of it is incomplete or even wrong. Okay, many people would now say "hey but I read it in a MEDICAL article!". The article itself might be good and contain correct information, but it still doesn't help if you just take a look at ONE paragraph without reading the rest of the text. The paragraph might tell that twitching is a symptom of ALS, okay, but you shouldn't forget about the OTHER paragraphs that probably explain that twitching is a benign condition in most cases.Ah, yes, and so much for "ultra-slow-onset-stealthy-EMG-hidden-surprise-ALS"...
Krackersones
Well-known member
Gary,Thanks for sharing the information you did. I too have a less than straight forward situation -- three clean EMGS but a muscle biopsy showing denervation done on the same day as the third clean EMG. When I mention ALS, my neuros get so irritated with me because they have repeatedly told me that is not what they think I have. I just hate having findings consistent with it like twitching, denervation, and hyperreflexes. On my most recent neuro visist, I asked about the clean EMG with denervation on biopsy on same day issue and he said, "I see that all the time." He also said, "you don't have ALS, you have demyelinating neuropathy." Krackersones
My comment about clonus is being taken wrongly, because I typed it wrongly. Clonus alone may or may not be significant. My original post should have included atrophy and weakness to go along with clonus. What I was trying to say is that one symptom does not a disease make. To have ALS you have to have alot more than one symptom. Later...