by Little Lost on February 18th, 2014, 10:09 am
Scaredlin Quote from your post “ You know this is prompting me to see yet another neuro next week …this is torture etc etc….”
No!! Scaredlin I am sorry but I feel you are taking my words and rewriting the equation again. You are taking one part of what I said and used it as ammunition to shoot yourself with.
I can’t leave your reaction unchallenged and I am not meaning to sound in anyway harsh or rude, but I cant take the the responsibility for your new " have to run back to the neuro now " fear because of what I wrote. That kind of reaction, although driven by fear would lead to greater and greater censorship on what people can and can’t post. I am sure you dont want to be on a forum that talks about fluffy clouds and cute puppies while you lie on a bed of cotton wool with the blinds down pretending the world doesn’t exist? It is your reaction to what you have read that is hurting you, not us. Out of all the valuable paragraphs of information and reassurance you have been given by various spectrum of people, you pick out just 2 LINES to focus in on, saying you now need tongue emg and concern about needles being in for only 30s all because of what we wrote.
Line 1: From Twitchy Doc that says EMG of limbs can’t detect damage to bulbar region ….. (Never mind the screeds about why this is not important to your situation be it 6 weeks or 6 years twitching, did you not get at all about what I meant about the cellar and roof, and all the info td put about what you have had tested.))
Line 2: From me : EMG must be observed for at least 90s (some use 3mins), before a muscle can be declared free of fasciculations with some degree of certainty.
This was just a point of interest. You interpret this as your neuro only recording for 30s and a worry. . Listen the 90s rule is for neurologists that HAVE TO specifically find FP for the DIAGNOSIS CRITERIA of ALS. This is not for BFS, neuro probably doesn’t require to record your fasciculations, because there are no other findings in the muscle or the clinical exam that merit this extensive search. Most do a quick screen and if suspect for ALS or other disorders will go back and then hunt for the FPs. Others are just tougher from the start. You don’t need a 3 min investigation to see fasciculation, neuro already knows you twitch. He knows that bit of the equation already and he doesn’t NEED to record it because you have no criteria to fill because you don’t have suspicion of ALS. ( interestingly my neuro says they don’t always say to patient they saw isolated FP because it would worry them needlessly, so they keep quiet unless asked, but they do put it in report )
So to recap out of it all the info you chose those 2 lines, and even then they have been taken completely out of context, and when you then say regarding our posts….Quote Again “ You know this is prompting me to see yet another neuro next week …this is torture etc etc….” This is not fair on us. You were the one that asked the factual questions, nothing I put was alarming.
LISTEN MORE IMPORTANT THAN ANYTHING YOUR NEUROMUSCULAR SPECIALIST (not just a general neurologist) SAYS YOU ARE FINE….THEY ARE THE ONES WHOSE ADVICE MEANS MORE THAN ANYTHING ANY OF US CAN SAY!!!!!
I am so sorry for sounding harsh but I am a bit exasperated. I know the fear you have but there comes a point where you have to take hold of yourself, there are people on this forum that can support you with that, and they do it fantastically.
Six weeks in is not long, but you will be absolutely fine. Trust your neurologist anything we say is just secondary to that. Take a bit of control back, just enough to stop running, and people on here will help, you are not alone in this.
Hi Gary and Yuliasir and Twitchy Doc
Thank you for positive replies to my initial post. I am aware of the effort it has taken for you guys to build up this forum and I do try to check and recheck what I am putting down. The FP bit was just for some general info, but you are right it changes nothing about the basic message this forum has always advocated. I have spoken to a few neurologists and quite a few have knowledge about this site. Gary sorry about the football post as I believe you were a bit of a player yourself. (I know you didn’t complain you are well past that stage).
Helen x