Calling Twitchydoc and Bobajojo - can you reconcile opinion?

[Scaredlin]

Little Lost- that was an very very information and logical explanation it makes total sense to me. Thank you for posting--

Unfortunately, and this is just where I am in the Debbie Downer stage, (and honestly were you not all there in the beginning where you were doubting Thomases?), I do not have 6 months (as Yusalir points out) under my belt yet. I have only been twitching for 6 weeks, AND might I add my neuro was one who only stuck the needle in for 30 seconds. I have mentioned before he has fellowships in neurophysiology and in neuromuscular diseases so I don't doubt that he is competent and good. I am consoling myself with the fact that he really doesn't think I have it was maybe just doing the test to appease me and maybe didn't see the need for the protracted 3 minute needle. As you all mention the clinical is the most important.

So I don't have 9 months or three years of twitching time - 6 weeks.

But the way Im presenting, twitching and weird mouth tongue symptoms (which are not slurring and swallowing related), I would imagine according to Little Lost it would be unusual to be bulbar.

You know this is prompting me to see yet another neuro next week. This is torture. Torture. And that won't even help me because it will only be 8 weeks by then! Do you see what I mean? Back and forth, back and forth.....

I

[Scaredlin]

Oh - Unless I can convince him to do the emg of the tongue, then I guess I can conclusively rule out bulbar (according to the TD and Little Lost's explanation). Maybe then I can relax.

[garym]

one other thing i would say is that there is overwhelming evidence that bfs does not, I repeat does not develop into anything bad.....go ask the mayo clinic and then come back here and see real world examples.....don't even talk to me about statistical anomalies that pop up in some research paper. I haven't read any of the "latest" research being reported, and frankly I don't care to, but unless they are finding something like 10% of als patients presented with fascics before weakness with NO OTHER EMG CHANGES, none of us should give it a second thought! Human nature is such that some people bury their heads in the sand, some people keep their eyes wide open, and others refuse to see what is clearly and plainly in front of them.....we have all types here, and some just refuse to accept the fact that benign fascics really are just that, benign and will continuously search for contrary information to prove their point.....i just don't have the time for that type of silliness but to each his own.

[TwitchyDoc]

LittleLost: Thanks for confirming my words. It is hard if I have to prove simple facts like this one with EMG.

Anyway Scaredlin, you do not have clinical bulbar signs so you do NOT need the EMG of your tongue.

[Little Lost]

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

[veryworried123]

yulisar quoted "if within reasonable time (which, as far as I understand, still is about 6 month or so) your twitches do not accompany with specific changes on EMG and clinical exam / weakness, then no ALS should be suspected."

i believe prof cavihilo stated 8 months

but is this only if you have had a questionable EMG to start with or for everyone that twitches

I get both sides of the story

some say you don't need to wait 4-6 or 8 months and some state you do

see how things can get confusing

perhaps we can clarify

[Rothhaar]

@LittleLost:

Thank you very much for your clarification concerning the "30 seconds vs. 3 minutes"-thing.

But to be honest I don't understand it yet: In your previous post you basically said that for a valid EMG the needles must be stuck in the muscle for 90 secondes up to 3 minutes.

Now you say, that this is only relevant when a neurologist already suspects a MND and wants to investigate this further. So with a clean clinical exam there were no need for a "3 minute"-EMG.

If this is both true, however, then what is the point about a "30 seconds"-EMG anyway? You stated that 30 seconds are not enough to show pathological changes. If this is right, it means that a "30 seconds"-EMG (like I had it as well) can't rule out anything. So with "30 seconds only"-EMG's ruling out **S would rely merely on the clinical exam with the EMG being in fact worthless (and then we come back to the 6-8 months problem, which bothers me as well).

Sorry, but this whole discussion confuses me to a point where I'm really about to fall back into a state of severe anxiety.

[MarioMangler]

And again I go back to what I said earlier. You guys are missing the forest for the trees.

Does it really matter what the nitpicky details are about this, considering it doesn't apply to anyone here in the first place? I mean, I am as big a fan of obtaining knowledge as the next guy, but when you spend days, weeks, months, years, thinking about and worrying about stuff that doesn't even apply to you, the problem really isn't BFS anymore. At this point now the big problem in obsession.

[TwitchyDoc]

As for the 30 vs 3 minutes, you are mixing two things. The long time is needed to detect fasciculations which often fire at very low frequencies in ALS patients. As LittleLost mentioned, Al Awaji criteria allows quicker diagnosis because they consider fasciculations (under specific settings) as sufficient sign of denervation. So if a patient has clear signs in two limbs and they detect fasciculations in another limb, they consider that as a sign of denervation. And that is why they need to wait.
Fibrillations are constant activity and are detected immediately if there is denervation proces in place.

Mario:There is no way how to tell - before a reasonable time passes, as mentioned - whether or not that applies to anyone. You said you were a fan of obtaining knowledge - go and read the recent findings and maybe you will finally understand that things are not as simple as you think.

[Rothhaar]

As for the 30 vs 3 minutes, you are mixing two things. The long time is needed to detect fasciculations which often fire at very low frequencies in ALS patients. As LittleLost mentioned, Al Awaji criteria allows quicker diagnosis because they consider fasciculations (under specific settings) as sufficient sign of denervation. So if a patient has clear signs in two limbs and they detect fasciculations in another limb, they consider that as a sign of denervation. And that is why they need to wait.
Fibrillations are constant activity and are detected immediately if there is denervation proces in place.

Hi Docen,

thanks a lot for this clarification. Now I got it
These changes from El Ecorial to Al Awaji criteria can really be confusing if you aren't a dedicated MND specialist.

[Scaredlin]

I apologize for what I started, I really do! I did not mean to incite mass hysteria.

(And if I seem hung up on bulbar its because I have muscular/pulling tongue pain on the left side which has been there since the twitching which no dr has been able to explain- or really cared about so I guess that goes to show you slurring and swallowing and being in motor control of it are the key. I do not believe he saw fasciculations in it either). But I am 45 female and it does tend to hit females/menopausal time period...

Enough from me. I apologize. You have all been very very helpful and you are right I am hyperfocusing on the negative and in doing so sinking others who had just found their footing as well. Unacceptable. Sorry, Im a research attorney so Im a pitbull with things and tend to obsess and overanalyze. Im taking a break. Happy thoughts.

[bobajojo]

Mario:There is no way how to tell - before a reasonable time passes, as mentioned - whether or not that applies to anyone. You said you were a fan of obtaining knowledge - go and read the recent findings and maybe you will finally understand that things are not as simple as you think.

This is the type of comment that keeps people coming back in fear. What findings? Forget it, I don't want to know. Docen, why not just tell the newer twitchers to listen to their doctors and get on with their lives? That would be the best thing a veteran twitcher can write on here, especially one who has been dealing with this as long as you have.

-Matt

[Rothhaar]

Sorry, Im a research attorney so Im a pitbull with things and tend to obsess and overanalyze. Im taking a break. Happy thoughts.

Similar problem here: I'm a philosopher. We are so excessively trained to overanalyze everything, to find any hole in an argument, any inconsistency in a statement etc.
I guess this is not really a good background when you are twitching ...

By the way, I don't think there is a need to apologize.

[RobJ]

If you twitched for 20 years, then one day woke up with a weak thumb, then weak hand, would it be impossible to be MND? Absolutely not! Would you argue with the diagnose saying but I twitched for 20 years how possible? Then the Doctor would say you are correct, impossible to twitch for 20 years then get MND, must be something else. Can't be MND....sounds foolish doesn't it.

If you flip a coin 99 times in a row, and it lands heads, what's the odds that you will toss a head? 50/50......

If you twitch for 99 years, what's the odds after 99 years of twitching of acquiring MND? Same as the individual that doesn't twitch.

Twitching doesn't mean a thing, never has, never will............Almost unbelievable that it's debated all the time.

It's possible to get MND whether you twitch or not.

[veryworried123]

i'm still *beep* confused aboty twitchdoc comments and if the waiting period is required if you had a clean emg only showing fascialuations (or so i was told, how the hell knows whats in the report)

can someone explain it to me and other in easy to understand terms