Considering a Forum Break?

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Christi888

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Hi Everyone--Like Jennifer--I, too, was considering taking a 3 or 4 month 'break" from the forum. However-since you people here are not only helpful , supportive- but also very knowledgeable--I wanted to post this question here. :confused: I should have asked the Mayo Clinic neuro--but as is the case so often w we patients--so much is on our mind--we forget! Right? :) Anyway---was perusing the test results....I read on the EMG.(.i was given the emg with the "cramp/Fasic"...protocol)--& it tested....negative! It reads....."EMG...cramp/fasiculation protocol with repteitive stimulation at....2--5--10--20--50--100 Hz...did not show prolonged afterdischarges and no cramping occured. :( :( "Clinical Interpretation- The EMG is normal-there is no electro-physiological evidence of cramp/fasiculation syndrome-or another disorder-or peripheral nerve hyperexitabilty-!on my.."diagnosis"..it reads-**-"Occasional cramps & fasciculations...without any objective evidence of any worrisome substrate**-As i may have stated---the day...I saw the neuro---& had my emg.....I was NOT having a bad day....(tho...there was some cramping & fasics)--- Also--on the "report"..The neuro states.*.."I am uncertain as to the cause of Mr. Cs subjective sensations regarding these abnormal movements in his musculature. However--I can say with quite good confidence that we are not overlooking any worrisome or life threatening problem.-----------------------!! :) My dear friends here-Question---Tho I do feel good my thorough neuro was 'normal"...it still..." concerns"...me.....that....they do NOT know...what is causing these cramps...fasics......muscle movements! :( I kinda woulda....almost felt ..'better"...IF...my emg came back "postive"...for "cramp/fasic"...syndrome! Follow? :unsure: I'm afraid..of the unknown? :eek: (This is driving my poor wife...crazy! She states....with some logic---"you went to Mayo Clinic.....& they did not find anything seriously wrong!)--Sooo--my question----"IS it possible......to have bfcs....AND....test NEGATIVE...on the emg....with the 'cramp/fasic...protocol"? :unsure: :unsure: Please------------get back...! I know we have some really...'knowledgable"...people here-! Hoping to hear---Thanks.....relieved & a bit confused... :( .Christian--
 
They aren't testing for BCFS, they are testing for the bad stuff. If you don't have the bad stuff, I doubt they really care. Listen to your wife, you were just at the Mayo Clinic 2 weeks ago. What more do you want? :D)
 
Hello Christian,Your writing style makes you the most colorful poster on this site, so pleased to hear that you are back from Mayo with a clean EMG and exam. :D) In regards to your question, yes it is very possible, and the same thing happened to me on my EMG, not a twitch, not a one. There is a site out there - teleemg, that explains this is not uncommon. Regardless, be pleased that nothing like fibrillations, or sharp waves showed up, that is what counts.
 
Thank you, Mario--(tho my neuro did say they were using the "Cramp/fasiculation protocol")--I do hear you--!I was just curious-And, "Running Bear"- thanks for the compliment on my writing style! ;) What, in particular, makes my writing style so..."colorful"-!you made my day--! (As I am a writer)--regards- Christian :)
 
Christian,For an EMG they shoot electricity down your nerves and measure the resistance.Fasciculations sounds like static. I forget whether they used an EMG or the test where they stick the needles in your legs. But they actually let me hear the fasiculations for me.You are going to have your good days and bad days. In a year or so I tell you with all likelihood you will have a day where you go through and in the evening say to yourself 'hm... I didn't even know I twitched today'.Anyway I one time asked about the specifics of the EMG and the doctor told me 'Our tools are not that sophisticated'. So if you are having a good day and you are not fasciculating much or the doctor isn't really looking for it, then yes it is possible to have a 'clean emg' and still fasciculate.Remember that even normal people twitch. Ever go to a gym, or move your a bunch of furniture and your muscles twitch afterwards? Or maybe you had a long day and your eyes twitched. But by the next day it was gone.Well you have that, just more than a 'normal person'. In time it might go away. Or might not. But it will probably decrease.BTW I suggest you stay on this board (but no others). I know people take breaks, but you are less likely to drive us nuts than you are your wife. So until you are 100% satisfied, this is a safe place to put your thoughts.-43RichyThe43rd
 
Christian, like mario said, there are no tests FOR BFS or BCFS. They test for the bad stuff and make a diagnosis from there. You can't test for something that doesn't exist. BFS "exists" but not "clinically" in the fact that there is no set of markers to test for. All you can do is test for tangible things and rule out the bad stuff from there. Just because you didn't "twitch" or "cramp" during the exam doesn't mean by ANY stretch of the imagination that they "missed" something. You are forgetting a couple of VERY important facts. 1) When they perform an EMG they aren't looking for "twitches". They are looking for dirty conductivity, spikes, etc. in your nerve electrical pathways. 2) Twitches caused by an honest to goodness neurological problem aren't the CAUSE of the problem, they are a symptom OF that problem. If there is no evidence of a problem, then obviously it isa benign condition, AND... if it was indeed a serious condition and you were already having twitches and other symptoms, then that would mean the disease is already running its course and would indeed show up on tests, as weakness, as atrophy, etc. Keep in mind, twitches in ALS are SECONDARY! They happen AFTER nerves have already begun dying and disconnecting. If you have colon cancer and you get uncontrolled bowels from time to time, if it is a day where you saw the doctor and you didn't have a bowel issue, is the colon cancer gone that day? Heck no! If you have a brain tumor that causes headaches, and when you go see the neuroologist you don't happen to have a headache at that moment, does that mean the brain tumor disappeared at that moment in time or won't show up in a brain scan? Heck no! If you had a serious condition, they don't look at secondary symptoms to make a diagnosis they look for the actual problem and make a diagniosis from there. For one, in ALS the TYPES of twitches, HOW they present themselves and how the cramps present themselves are all completely different and are happening for ENTIRELY different reasons than those of a benign condition. ALS and BFS twitches don't look the ame, they don't feel the same, and they don't present like each other. I, and other "experts" on here have said this so many times we're turining blue in the face! I don't know how many times we'll have to keep saying it.If you had a "real" disease, such as ANY of the honest to goodness muscle or neurological diseases, they don't come and go. They "symptoms" may come and go, or at least the NOTICABLE symptoms might, but the disease is ALWAYS there! You may have good days and bad days BUT, the fact that the DISEASE is still there REGARDLESS of the secondary symptoms still remains. With ALS, you may not twitch but the disease is still there running its course. With a brain tumor or any type of typical cancer, the tumor is still there growing and doing its thing but the secondary symptoms may come and go. It doesn't mean that the tumor will suddenly disappear in an X-Ray just because that day you weren't experiencing any usual symptoms.I don't know how many times we have to say this on here folks. A clean EMG means no disease!!Twitches are meaningless in diagnosing a disease. Cramping or "perceived" cramping is meanigless in diagnosing a disease. Twitches caused by ALS and BFS are COMPLETETY different from each other. How many clean EMG's and BFS diagnosis' do you need to get before you realize (or believe) that you have NO DISEASE? Our brains and nervous system have a billion more times the wires and "circuitry" than the best of the best computers of today. How many times do computes get unexplained glitches where they do something that isn't a virus, isn't a hardware or software problem yet it freezes or locks up, functions oddly, has to reboot, etc? Don't you think our own circuitry in our bodies can "glitch" from time to time? This rings especially true with age. It doesn't have to be a "disease" to function oddly or do something off kilter than the average other part of the population, but the fact of the matter is; some of us DO have a minor wiring issue that causes us to "glitch", and just like that computer glitch that can come and go... so can our glitches. You don't have to have a "diagnosis" to explain everything. You don't appear to have a "disease", the tests back that up so just accept the fact that your computer functions a little more oddly than most other people's and learn to deal with it like the rest of us do. Unlike a computer, you can't go out and buy a brand new one everytime your body gets a glitch. Luckily our bodies do a self diagnosis of themselves and can fix themselves under most circumstances. It doesn't have to be a life threatening circumstance for it to NOT be able to fix itself. BFS. BCFS and MANY other NON life threatening ailments are also included in that bunch.
 
Thanks guys. It doesn't really "annoy" me to be here. I like helping people. I just get a little dumbfounded sometimes at just how much it takes to convince people (not just Christian, but LOTS of other people too) of their diagnosis. It seems neuro visits, EMGs, seeing multiple doctors, hearing from tens of thousands of people on here that share the exact SAME scenarios, symptoms, etc. just isn't enough sometimes, so I need to come on here every now and then to bring a little reality and sanity into the situation with a few easy to understand analogies, often times with a little "tough love" to get some of these people's heads clear again and thinking straight. It's too easy to get caught up in teh fear, panic and irrational thinking. I knew one guy about 7 years ago that had 13 EMGs!! THIRTEEN and he would STILL PM me and ask me what I thought about his symptoms. LOL I mean, how many do you need? 23? 150? LOL ONE EMG is plenty and is ACCURATE to tell the story. You either have pathways that are deteriorating, showing spikes, sharp waves or non-conductivity due to a disease running its course... or you don't. If you have symptoms cause BY a disease (such as ALS), then the symptoms (being that THEY are caused BY the disease ALREADY running its course) aren't important because they don't test the symptoms, they test and are looking for the CAUSE OF those symptoms. If they can't find that, then they rule-out the chance of "disease" and diagnose it as benign. If you actually have a disease and you have symptoms asa result (such as twitching or ANY neurological problems), then that disease is well within running its course and it WILL show-up in clinical tests, period, end of story... unless of course the examining doctor is a blooming idiot or something and is simply not paying even the slightest amount of attention. The problem is thouh, people think "benign" means "harmless". Migrane headaches are "benign" too, but are they harmless? Hell no, they hurt! Irritable Bowel Syndrome is also a "benign" condition, but is it harmless or without annoying symptoms? Hell no! Stomach cramps, diarhea, etc. are all real and inconvenient, and sometimes painful symptoms of IBS, but IBS ain't going to kill you. BFS and BCFS are very similar. Just because they are "benign" though doesn't mean they are painless or symptomless. One diagnosis is wenough for most people to realize that they have BFS, but some peopel need a second opinion and sometimes even a third, but after multiple EMGs, several neuro visits, tests, etc., it's time to quit beating a dead horse and move on. You won't find something that isn't there and like I said in my previous post, not all symptoms have a diagnosis. Sometimes we just have "glitches" that for the time being go unexplained. That's just life and the limitations of what we know about human anatomy right now. No more... no less.
 

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