Okay guys I got some answers

BFS Online Support Group

Moderators: JohnV, Arron, garym

Okay guys I got some answers

Postby KERRI on June 27th, 2003, 1:19 pm

I was brousing through the MDA site, this site is very helpful. I found some questions from various people about various things. I found a question about EMGS.

The question basically asks if ALS was slow progressing at what point would is show on emg. Is it possible that an emg done to early in the course of the disease would come out clear.

The answer was YES, this explains Carol's dilema. The emg cannot show abnormalities if the disease is not affecting the muscle tested. However clinically affected muscle should not be normal.

He goes on to say this, The clinical exam does not show weakness until 30 to 40 percent of the anterior horn cells are lost, EMG will pick this up earlier.

Another question, Have you ever known about a patient that has been diagnosed with als after having a clean emg.

ANSWER A completely normal emg, and that includes tongue and facial muscles affected in bulbar onset ALS, is incompatiable with the dx of ALS.


Carol must have had bulbar ALS and it had moved to her extremities at the point when she experienced the cramping and fasciculations, but that had to be fairly new and that is why the emg was negative, bulbar is tricky if they had checked her tongue or facial muscle at that time she probably would have been positive.

What does this say, emg is highly sensitive. It can be to early but it is always good to have them repeated, and if after a few emgs, you still have negatives it sounds like a very good sign.

Kerri
User avatar
KERRI
Hero
Hero
 
Posts: 375
Joined: May 8th, 2003, 11:53 am
Location: ATHENS, NY

Postby Arron on June 28th, 2003, 1:30 pm

Quote; "Is it possible that an emg done to early in the course of the disease would come out clear." "The answer was YES, this explains Carol's dilema. The emg cannot show abnormalities if the disease is not affecting the muscle tested. However clinically affected muscle should not be normal."

Didn't I say this very same thing, over and over again in Carol's and many other posts since time began? If you get ALS sarting in your ankle and you get an EMG done in your pinky finger right after you notice it, it probably won't show up early-on in the diseasae, but after some months have gone by, it probably will! It has to have time to MANIFEST and progress AND you need to test in obvious areas that pertain to the problems. That's why it says; "However clinically affected muscle should not be normal" in the quote Kerri got. It certainly doesn't take years to find this out like some people posting on this site keep claiming. You keep questioning me and the Mayo study, now are you going to question the experts at the MDA too?? :lol:

Quote; "Another question, Have you ever known about a patient that has been diagnosed with als after having a clean emg?"
How many times have we backed THIS line up?
"ANSWER A completely normal emg, and that includes tongue and facial muscles affected in bulbar onset ALS, is incompatiable with the dx of ALS."

So again, does everyone not believe the MDA as well?? "is incompatable with the dx of ALS"... how much more clear do you need it?? EMG's don't lie!! Clean EMG, (especially after having a second one a few months later), = no ALS. That's pretty clear! And it doesn't say anything about the need to wait up to ten years to find this out. I mean geeze, if it took up to 10 years to rule out, that's like the earthquake "experts" saying there is a 50 / 50 chance of having a "big one" here in California in the next 30 years. Great science guy's. It is NOT that way at all! A few months and MAYBE up to 1 year is about as far out as anyone with any kind of doubts should have to wait. And even then, it is a bit stretched.


Quote from Kerri; "...and if after a few emgs, you still have negatives it sounds like a very good sign"... You think??? That's only the MAJOR concinsus of the entire neurological community and has been since time began. All of this talk that it could take years to fully rule-out the possibility of having ALS because someone had one or two doctors say this is about as outlandish as you can get. Doctors are PEOPLE and they have their own opinions and judgements. You HAVE to look at the WHOLE picture and the Mayo study AND the MDS back up EVERYTHING i and many other's on this site have been saying, but some of you just continue to choose to believe the opposite. Do you think we keep saying this stuff over and over again because we have nothing better to do? If you do, you might as well pack it up and leave because if you don;t believe what 99% of EVERYONE"s neuro's have told them on here and many other site, or what the MAYO study concluded (and has STILL concluded) or what the MDA says on top of all of that, then you certainly aren't going to listen to me or anyone else, so you mightas well curl-up in a corner somewhere and believe what one person posted on here because HIS doctor's said so. I guess his two docs know more than the combined / cumulative data ALL of the other doctors and researches in the world have concluded.. which is NOT consistent with what has been posted on here lately.. but hay, don;t believe ME... I just like spending hours and hours on here trying to convince people of the facts.. oh yeah, I can't use that word anymore or people will gripe.. so I'll just say... "what the overwhelming evidence supports and points to", instead.

I can't convince you to believe the facts.. oops? there's that word again, I mean.. what the evidence STRONGLY points to..., and the Mayo clinic study can't convince you, and the MDA's conclusive study's point to, then why should you believe anyone at all? YOU have to make the choice to what YOU want to believe. If YOU choose to overlook ALL of this combined information that BFS doesn't NOT turn into ALS and that a clean EMG or two rules out ALS about as positively as you can get, then I don;t know what else to say...

It's funny though, when someone comes on here from another well known "stir it up" mesage board and says that his doctor said it could take up to ten years to rule ALS out, or some other kind of off the wall info, that the vast majority of data concludes otherwise, and YOU choose to go off the deep-end and believe it, then that again, that's up to you. But no matter what you want to call it... facts, points in the direction of, is conclusive of, or whatever, the resuklts are always the same.. no one with BFS has gone on to develop ALS, period! And, a clean EMG or two is about all the proof anyone needs to rule out the possibility of ALS. That's about as clear as you can get... and sure, there are going to be peole that dispute this, just as always... so, if you want to dispute this, show me evidence then. Not what YOUR doctor says, but hard proof! Show me someone that actually too "up to ten years to diagnose" or has developed ALS after having BFS, because not only would "I" be interested in seeing this exclusive information, I think the Mayo Clinic AND the MDA would like to see it as well...

As for carol's scenario. No matter what you want to argue about, what facts we have or don't have on her case, the bottom line is, she had ALS from the start. How it was overlooked really doesn't matter at this point. The fact of the matter is, it wasn't BFS to begin with... There is no "falling to the floor" in BFS. There is no atrophy or weakness in BFS and those are very BIG signs of ALS, NOT BFS...
Last edited by Arron on June 28th, 2003, 11:40 pm, edited 1 time in total.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby dave YY on June 28th, 2003, 6:35 pm

Kerri, I have some comments on your post. But first;

Aaron, you win. Your last post is so riddled with misrepresentations and errors and contentious logic (obviously directed toward me) that I just don't have the time or the will to take it on. No doubt your flock will rejoice.


Kerri, sorry. Back to you. Something else to consider is that what you read on the MDA site almost surely wasn't written to address the task of distinguishing BFS from ALS. From what I've read and heard, there's a difference and it favors us twitchers. Since twitching is uncommonly or even rarely the sole first presenting symptom of ALS, presumably what you read more readily applies to PALS who mainly present with other symptoms.

As I understand it, if you've got widespread twitching like many of us here the EMG is probably even more accurate in distinguishing it from ALS. In ALS, twitching usually happens further along in the disease process, after nerves have started dying, and if you've got widespread twitching it should mean you've got widespread denervation, which greatly increases the odds that an EMG will pick something up. That is why if you go looking for trouble, it is possible to find studies or papers on EMGs missing ALS in the early stages (or anecdotes if you visit ALS forums which is a BAD idea), but to the best of my knowledge you won't find any studies showing EMGs missing ALS when the presenting and sole complaint is twitching.
dave YY
Member
Member
 
Posts: 31
Joined: May 25th, 2003, 5:39 pm

Postby lets twitch again on June 28th, 2003, 8:10 pm

very nice post dave!
After all those years with bfs the info you just posted should exctualy calm your very own worries? I was allways wondering why you still questionyou own fate.
lets twitch again
Member
Member
 
Posts: 23
Joined: April 3rd, 2003, 11:07 am

Postby j1 on June 28th, 2003, 9:22 pm

I think Dave YY summed it up. If you twitch (and twitching was your first symptom), and you have an EMG...the EMG will find the problem. It is said that the disease has to be present for some time (5-6 months) before symptoms will appear (i.e. twithing, weakness, whatever) I will soon post a post that Jayman posted on braintalk about EMGs..it sums this up really well.
J
j1
Member
Member
 
Posts: 26
Joined: August 28th, 2002, 3:14 pm

Postby dave YY on June 29th, 2003, 12:30 pm

I'm pretty confident what I've got is not ALS, but I believe people with BFS are more anxiety-prone than most, and ALS tends to be the most elligible recipient of this anxiety if you know what I mean.

I wish nothing more than that my neuros had waved off my fears and had given dx's of benign fasciculations that were not qualified as they were (though overwhelmingly qualified in my favor--overwhelmingly) In July I'll be seeing one of them again and I hope to nail down a few questions. I do wonder if my complaints of occasional tongue and jaw fatigue might be the reason for their noncommital nature ( they have both called it "benign"... I've had these episodes for almost five years now when sometimes for stretches of several days my tongue gets tired talking or jaw tired chewing). However I've never slurred words and one of the neuros told me "I can tell just by listening to you that you don't have bulbar ALS." I'm also hypothyroid and had/have CFS when this all started, and I think I can detect a systemic association, and if anything the bulbar stuff has gotten better since then. So I don't think it fits the pattern of progression or severity for bulbar ALS. Oh yeah, though neither of them generally do tongue EMGs, one of them did do a stick in the chin, saying it was one of the bulbar muscles. It was clean. Like the others.

I don't know why people are reacting with such hostility to what my neuros say, much less string me up for what they say. Only the contentious parts have been dissected to for use in particular "essays."

Aaron's misrepresentations of what my neuros said is sufficiently alarmist and wong-headed that he is doing everyone who harbors doubt a disservice by emphasizing only the (potentially) unnerving part of what they say.

(sorry for the pun... not sure if it's in good taste or not).

The one particular neuro does NOT say "you have to watch out for ten years," as Aaron suggests. That is not his message. His message is that ALS after a clean EMG even in its early stages is unlikely, and very soon becomes "highly" or "extremely" unlikely. The other seems even more confident, saying that even in its earliest stages an EMG might miss ALS in twitchers in under 1% of cases (that DOES NOT mean if you twitch you've got somewhere just under 1% chance of actually having ALS--it means out of the small percentage of PALS who present only with twitching, THAT SMALL A PERCENTAGE MIGHT BE MISSED--just think about those odds).

Essentially, the difference between the odds they suggest and "never" is very slim and shouldn't be of concern to anyone. That is very similar to what you'll find on the Cleveland Clinic site, for example, where neuros often respond saying things like a clean EMG after 6 months makes ALS "highly unlikely" and after 12 months "untenable." (this is NOT license to freak if you're under six months!!!! Read on).

And to cast two respected neuros who teach EMG at medical universities as ebberants or rogues and isolated in their beliefs is bizarre coming from laymen. The one I saw in SoCA was described to me as "the best in the area for this kind of thing" by the doctor I saw for CFS, who himself was considered a "doctor's doctor" by the CEO of health insurance group that gave me his name.

It's true that I don't 100% embrace the belief that it has been proven that BFS and ALS are totally unconnected, that it is proved they don't share a single possible causative factor or even maybe a trigger for some kind of genetic predisposition. Who the hell knows? All I know is I don't, and I've never seen anything published "proving" it. However, that doesn't matter. Worrying over that is recreational paranoia. None of that changes the odds, which have not changed since Carol's post. Carol, even if that's the whole story, was inevitable, that someday someone's ALS dx was going to be missed in its earliest stages. And here's a prediciton--that someday, we'll hear about someone who's had BFS for ten years or whatever who gets ALS. It doesn't mean the two are connected, but it's going to happen, it's inevitable.

It's understandable to be affected by Carol's post, and humane to respond to her with compassion. But in regards to BFS it really doesn't change much. A clean EMG and clinical at any stage strongly points away from ALS. All the rest is flotsam and jetsam.
dave YY
Member
Member
 
Posts: 31
Joined: May 25th, 2003, 5:39 pm

Postby lets twitch again on June 29th, 2003, 9:45 pm

Dave
"So, after almost five years of twitching, several clean EMG's and clinical exams (one earlier EMG picked up rare polyphasic units that the neuro wrote fell within normal limits and were not mentioned again on later EMGs), I'm apparently not totally out of the woods or back to the same risk as normal populations."

I have a feeling your neuros are digging in dirt. After many, many month of my own "internet research" (outch) and doctors visits(three in US and one in my home country Germany), your neuros statements truly sunrises me. They really should do a better job to define what "not quite out of the woods" actually means. The first doc you saw mentioned that 99% of pals show specific problems on there first EMG if fasciculations are clinically present. Why wouldn't he clear the ticket after your last visit years later?
I believe he (and therefor you) should not share theoretical 'possibilities' if they become insignificant. Your odds to get killed by a car accident in the next five years are probably much higher than dying of a disasteres neuro disease.


My als specialist announced that one year of non progression is sufficient to leave the worries beyond, ....for good.
My fascis actually increased at my one year mark, and included several bulbar muscles. (i twitch at such intensity that it triggers coughing, a couple of month ago my neuro observed twitches around my chin area I
have never notice before)
I am 15 month into this now and still get new hot spots.

What is your twitching like these days, and how does it compare to the beginning days?



[/quote]
lets twitch again
Member
Member
 
Posts: 23
Joined: April 3rd, 2003, 11:07 am

Postby lets twitch again on June 29th, 2003, 9:46 pm

Dave
"So, after almost five years of twitching, several clean EMG's and clinical exams (one earlier EMG picked up rare polyphasic units that the neuro wrote fell within normal limits and were not mentioned again on later EMGs), I'm apparently not totally out of the woods or back to the same risk as normal populations."

I have a feeling your neuros are digging in dirt. After many, many month of my own "internet research" (outch) and doctors visits(three in US and one in my home country Germany), your neuros statements truly sunrises me. They really should do a better job to define what "not quite out of the woods" actually means. The first doc you saw mentioned that 99% of pals show specific problems on there first EMG if fasciculations are clinically present. Why wouldn't he clear the ticket after at your visit years later?
I believe he (and therefor you) should not share theoretical 'possibilities' if they become insignificant. Your odds to get killed by a car accident in the next five years are probably much higher than dying of a disasteres neuro disease.


My als specialist announced that one year of non progression is sufficient to leave the worries beyond, ....for good.
My fascis actually increased at my one year mark, and included several bulbar muscles. (i twitch at such intensity that it triggers coughing, a couple of month ago my neuro observed twitches around my chin area I
have never notice before)
I am 15 month into this now and still get new hot spots.

What is your twitching like these days, and how does it compare to the beginning days?



[/quote]
lets twitch again
Member
Member
 
Posts: 23
Joined: April 3rd, 2003, 11:07 am

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests