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Postby jcavan4125 on June 12th, 2004, 6:35 pm

OK I have to put my two cents in. Bulbar onset ALS Does not take years to develop, no matter who says otherwise. In fact it is the most rapidly fatal form of ALS with most patients dying from their disease within 18 months.

If information cannot be verified by reliable medical references, then it isn't worth reading. I'm not saying that anyone on any other site is purposely giving out false information, but anecdotal information is just that anecdotal! Remember this is the internet! I'm sure that you can find people out there that are ready to testify to almost anything you want;.... [i]We never went to the moon..., there is a cream that will make celulite disappear..., The United States is really run by the Tri-lateral commission..., I had ALS for years before I was diagnosed..., the list goes on and on! I'm not trying to be a smart***, my point is that on one hand you have the preponderance of medical evidence and on the other you have some individual telling you that his cousin twice removed says such and such. Who cares, what a waste of time. If you don't believe your neurologists, then why bother going to them in the first place! It isn't that hard to believe that someone with four years of medical school and four years of residency on top of however many years of experience knows more than someone surfing message boards on the internet!

Sorry if I sound worked up about this, but I do get tired of hearing about anecdotal stories that are given more weight than accepted medical facts.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Jenn311 on June 12th, 2004, 7:04 pm

I'm with Joe ;)
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Dear dont

Postby SLL on June 12th, 2004, 8:53 pm

Trust me, I did not start this thread to frighten anyone...more to get to the bottom, if possible, about strange postings I have seen elsewhere. I, too, scare the crap out of myself...I am the mom of a 3 year old and a 1 year old and am frightened by the future often when I think of things like this...I just wish I did not get these *beep* twitches. And I am angry at myself for being so obssessed by this...I see that I am not alone, and it is strange how this particupar symptom (twitching) brings out the very worst in fears for everyone.

I actually started this thread more to have folks chime in about what their neuros have told them, and to reinforce more the facts and what the neuros say, versus postings elsewhere. I cannot tell you how definitive my neuro was - he looked me in the eye and said "this is benign"...not "I believe it to be benign" or "probably benign"...I have noticed other folks here, too, have said that their neuros have been VERY clear - "you do NOT have ALS" ...so that is what sparked my concern/curiosity over a few very different scenarios elsewhere. Again, we have no idea what these folks' medical records say, who their doctors are (a standard GP possibly uninformed) and what the actual exams, etc... were.
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Postby Johnny on June 12th, 2004, 10:24 pm

TheyDon'tBelieveMe -

I hear what you are saying, but you are a little off on your facts regarding the person you said was diagnosed with ALS. Yes, he did initially post describing slow speech. His EMG was abnormal in a few areas, but he posted his report which stated that the abnormalities could point toward early denervation, but that not enough evidence was present to diagnose ALS. So in fact he has not been diagnosed with ALS. Additionally, he posted yesterday about his follow up with a neuro who noted the improvements in his voice and said that would not have happened if he had ALS. So I think it's fair to say he has not been diagnosed with ALS at this time.

I too was a little concerned about some of the regulars there immediately jumping to the conclusion that he was fine. But the man did have a follow up yesterday in which a professional neurologist did not diagnose ALS.

I would also like to add that that person is a fairly regular poster here, a married man with a wife and children he apparently dearly loves.
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Its not your fault SLL

Postby Bradford on June 12th, 2004, 11:17 pm

To: Theydontbelieveme,

What’s the point here? I just read the thread and the alleged ALS patient went to his doctor with slurred speech and swallowing difficulties. I also read the thread here at our forum I DIDN’T SEE ANYTHING IN THIS THREAD WHERE THE GUY COMPLAINED OF REDUCED SPEECH RATE! I think everyone who reads my reply should note that someone may be putting words and meaning into things where they are not applicable, beneficial, or truthful.

You must have a real “jones” about this issue and must know this guy really well to tell us all that he had reduced speech rate because he certainly didn’t say anything about it in the post that you participated in with him. Are we to assume that he has confided in you since he’s been diagnosed with ALS and you have his confidence regarding medical history to disiminate to the internet at will.

So why don’t you tell us all how you can say that he had reduced speech rate when by his own accounts, only BRIEFLY posted about slurring and swallowing problems. This guy joined brain talk in 2001 and here it is 2004 so there’s got to be something that made you put the two together right?

I remember seeing a post about motor neuron diseases in regards to ALS that bulbar progression is rapid to death compared to lower neuron involvement. In addition, bulbar onset by percentage is much lower than limb onset (more common). According to the numbers, this guy shouldn’t be surviving. Care to take a crack at that, or are you too busy diagnosing your self with ALS as your posts tell all you are going to do because you can’t believe all the neurologists you’ve seen.

Oh by the way, this information was gleamed form the Cleveland Clinic Neurological Forum in the archives and an outline to medical students by Dr. AJ Windebank of the Mayo Clinic titled Motor Neuropathies and Motor Neuron Diseases. How about your information where does it come from? Come give us a break and site your references or do us all a favor and pull the plug on your computer and donate it to a school or something because it would be better used there then in your hands!

Like jcavan, (who held back alot in his post) I've had enough of this guy and the junk he puts out there.
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Postby TheyDon'tBelieveMe on June 13th, 2004, 5:44 am

To: Bradford

I never participated in the thread I mentioned. As I indicated, I posted PRIVATE messages to the guys who said the poster's reduced speech rate couldn't be ALS related. You must be confusing that with another thread because the one I'm referring to certainly dealt with a guy who complained of reduced speaking rate and later reported confirmed motor nueron disease. So, I don't know which thread you're referring to, but it certainly isn't the one I was referring to.

"A protocol for identification of early bulbar signs in amyotrophic
lateral sclerosis" is a 2001 study published in the Journal of the Neurological Sciences. Excerpts:

"...while speech intelligibility is still within normal limits, a decline in communication effectiveness rating is apparent." "The strongest early predictors appear to be objective measures at the activity level involving speaking rate, and more subjective measures at the participation level including listener ratings of communication effectiveness. All of these parameters show considerable change before objectively measured reductions in speech intelligibility occur." "Although patients were objectively judged to have 100% understandable speech, communication effectiveness was in decline."

In addition to that, you'll find anecdotal cases in BrianTalk forums where confirmed ALS patients mention that their speaking had periods of improvement. There are also bulbar cases that did not progress "like a freight train", but progressed at a slow rate for years. I admit these cases are not the norm, but that doesn't mean they should be ignored.

I think your personal attack against me is unfair. If you've read my previous posts in this forum, I've regularly assured worriers that their fears are unfounded. My only desire is that facts be presented even if those facts might not make us comfortable.
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Postby jcavan4125 on June 13th, 2004, 7:14 am

To TDBM,

I don't have a problem with your description of early signs of bulbar ALS. The problem here is you go from an article in a reputable medical journal to anecdotal stories from message boards and combine the two together as if they are both equally valid! That is both confusing to alot of members on this board as well as disturbing. There are alot of folks on this board (and more joining every day) that have a tremendous amount of anxiety about their condition precisely because it has symptoms similar to ALS. It is their right to be given valid information about BFS, ALS, the difference between the two, and when they can feel secure in their diagnosis. While you say you are simply trying to present all the facts, not everything you are presenting is fact.

Bulbar ALS does not take years to present!

There has never been even one article that I can find in any medical journal or textbook anywhere showing anyone that had a normal EMG initially that went on to develop ALS. Not one!

ALS does not wax and wane, it is a progressive downhill course. Think about it; Amyotrophic Lateral Sclerosis. What does that mean? It means that the lateral aspect of the spinal cord sclerosis (scars down) on both sides of the cord. You can't get nerve impulses to transmit thru scar tissue. Once the damage is present (ie. once you start having symptoms), it is nearly
always a one way downhill course. I add "nearly" because if I don't you will tell me that there have been a few isolated remissions of ALS and that's true.

On the subject of anecdotal information and why I think it is a complete waste of time. Everyone has played the game where you have several people lined up or in a circle and the first person whispers something to the person next to them who repeats it to the next person and so on until it gets to the last person. The last person then repeats aloud what the first person said. It is often quite humorous how different the information is at the end of the line compared with how it originated. That is how I feel about anecdotal information. A medical journal article however has to go thru several layers of verification prior to approval and printing. Though, not perfect, a much better chance of reliability. Then after printing, the author has to endure the challenges of his peers that his/her information is correct and isn't in conflict with the body of evidence already existing on the subject. Again not perfect, Galileo was right and the rest of the world was wrong, but that's an exception to the rule. The point is with anecdotal information none of this is required. I can sign on anywhere I want and proclaim that in my world, the moon is made of green cheese, and I need no proof to back it up. I am my own verification, and therein lies the problem!

I have no problem with anyone bringing up anything they want to on the board (That's what it is here for), disturbing or otherwise; but I think it is essential that they present only facts not anecdotes. Or, If you have anecdotal information that you think needs sharing, then by all means share it; but let everyone know ahead of time that that's what it is, not fact. Most of all, don't mix fact with anecdote or both pieces of information are made less reliable. The members of this board deserve at least that!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby TheyDon'tBelieveMe on June 13th, 2004, 2:50 pm

I will be more cautious in the future about what I post. However, Nothing I've ever posted contradicts the standard wisdom that twitching itself is meaningless.

Also, you might want to take a look at this thread where at least two ALS patients report a clean EMG with an ALS dx later:

http://brain.hastypastry.net/forums/sho ... hp?t=10171

And this one where a bulbar ALS patient reports waxing and waning, and five years of speech problems with no swallowing problems:

http://brain.hastypastry.net/forums/sho ... t=wax+wane

I realize that those posts could be disturbing to visitors here, but I don't think that's a reason to hide them. Many are going to see them anyway, so we might as well dissect that information here.
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Postby Jenn311 on June 13th, 2004, 3:37 pm

I personally don't understand the point of posting information about ALS when this is a forum for BFS: an apparently unrelated condition. It just makes people uncomfortable. I mean, what's the point? All I can reason is that you are trying to relay the message that even when people have been diagnosed with BFS they should persue a diagnosis of ALS. That, in my opinion, is a pointless waste of time.

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Postby TheyDon'tBelieveMe on June 14th, 2004, 12:29 am

I'm merely trying to keep the information here credible. The original post to this thread asked about the apparant contradiction in information.

Many BFS'ers think they might have ALS. By responding to their questions, we can help either ease their mind or pursue further diagnosis. Is that so wrong?
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Postby jcavan4125 on June 14th, 2004, 6:22 am

It was kindly pointed out to me by another member that I misspoke on this original post, so I have editied it from it's original form. My point remains intact but I did not want to mislead anyone so I have corrected my error. To be clear, the cranial nerves are part of the lower motor neurons not upper motor neurons as I originally stated. Sorry!


Once again I will voice my objections to anecdotal information. I did read the posts from your hyperlinks to what I assume was braintalk. One individual had predominantly swallowing and speech difficulties initially. If a person having symptoms confined to the upper motor neurons were to have an EMG test, this might show nothing. Since at least one individual reported that they don't remember having any fascics, it is possible that their symptoms were initially confined to the upper motor neurons. Once lower motor neuron involvement was also present then an EMG would be abnormal. The point is, we don't know what their initial symptoms were, what their neurological exam showed, what their EMG showed, or what type of EMG they even had! More importantly, nearly everyone here complains of fasciculations in their muscles, which would involve lower motor neurons. Therefore, it is a moot point to describe a situation in which only upper motor neurons were involved since it is not consistant with the symptoms of the members on this board. By the time you are experiencing muscle fascics, you are dealing with lower motor neuron involvement!

Additionally, let's assume for a moment that what these folks are saying is correct; they all have bulbar onset ALS. They all had initially negative EMGs and they are all still alive. I'm not sure when any of them were diagnosed but at least one was 2001. I ask you, what are the chances that 3 individuals with these exceedingly rare circumstances all happen to be on the same board at the same time and still alive years after onset of bulbar ALS... Probably about a billion to one!!

I'm not saying that any of these poor souls are lying, all I'm saying is it is very easy for patients to be told one thing and hear another. A non-diagnostic EMG is a world away from a normal EMG. It happens all the time. A man goes to the doctor for a physical and finds that his cholesterol is too high. The doctor says that he will need to follow a strict diet and a regular exercise program and be rechecked in 3 months. If it is no better, then he will have to start medication. The man gos home and his wife asks how his physical went. He tells her his cholesterol was a little high but he doesn't need medication. Is he lying, or did he only hear what he wanted to hear!

Lastly, there are other entity's which are clinically similar to ALS but differ in certain aspects; two of these are progressive supranuclear palsey and spinal muscle atophy. It is possible that one or more of these individuals are carrying the wrong diagnosis.
Last edited by jcavan4125 on June 15th, 2004, 11:59 am, edited 2 times in total.
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Am I really being unfair?

Postby Bradford on June 14th, 2004, 6:09 pm

To: Theydontbelieveme

I don't think my assesement about things is unfair. I am simply going by the original hyper link to brain talk that you offered to all of us to make your point.

And now you are telling me that you didn't participate in this thread at brain talk? Are we to assume there is another Theydontbeleiveme at brain talk?

Let me quote from the brain talk thread you linked us to whos user name happens to be Theydontbeleiveme dated March 2004...

WCG,

I've been to four neurologists. One regular neurologist; one at a high-level diagnostic clinic; one highly regarded professor at a teaching hospital; and one renowned ALS expert. All ruled out ALS. R-u-l-e-d o-u-t. And I don't believe them. The professor and the renowned guy didn't do an EMG. In fact, the renowned guy didn't even do reflexes or strength! I suspect he didn't want to contradict the professor; his local friend and colleague who said my problem was mental.

They diagnosed giving no weight whatsoever to my slurring. I could overlook their decision to discount my subjective complaints of weakness, loss of coordination, etc., but the slurring was undeniable. Now, I'm certain I've got true weakness and the loss of coordination is undeniable.

You said that all the ALS symptoms can be explained by something else. What is that something else? What other disease has every one of those symptoms (which are all the symptoms I have) but isn't ALS?

I'm going to have my GP test my reflexes. If he says they're brisk, then I will make my own ALS diagnosis while I wait for an EMG to be schedule
d.

Apparently, you want to make your own diaganosis agianst 4 other neuros? How can we believe that you only want to offer help in light of what we read in your reply... or am I mistaken that this is not your reply in the hyperlink at brain talk?

I'll give you this, you certainly stirred up the hornet's nest.
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Postby TheyDon'tBelieveMe on June 14th, 2004, 8:40 pm

Bradford...I'll restate: The thread I was referring to about the guy with slowed speech was one that I did NOT participate in and never said I did. As I indicated when I originally mentioned it, I posted PRIVATE messages to tBradford...I'll restate: The thread I was referring to about the guy with slowed spBradford...I'll restate: The thread I was referring to about the guy with slowed speech was one that I did NOT participate in and never said I did. As I indicated when I originally mentioned it, I posted PRIVATE messages to two guys who gave the guy wrong information. You can probably find that thread. I did a brief search and didn't find it, but I'm sure it's there. In the archive of my private messages in that forum, I see that the portion of the posting's text I quoted was "Slurred speech is the most common early symptom of bulbar ALS". That poster was named bond007.

Yes, I'll make my own "diagnosis" for myself (not others) while I wait for an EMG. Obviously, that's not a real diagnosis, but my point was that absent a recent EMG and absent any weight whatsoever given to my slurring, then I feel comfortable second-guessing even renowned neurologists who admit they won't even consider a diagnosis until they see true impairment. Threads in the other forums mention (anecdotally) that an EMG done too early can miss ALS, and that if it's bulbar presentation but the EMG is done early and NOT done on bulbar muscles, it can miss ALS.

I don't care how good a neurologist is, if he doesn't do an EMG and doesn't even check strength or reflexes, there's no way for him to rule out early stages of ALS.

Now, if you review my history of posts, I've never tried to project my case onto others. I think I've been a helpful forum member interested only in facts and helping others.
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But...

Postby SLL on June 14th, 2004, 10:49 pm

But if you have twitches that are being caused by denervation in ALS no matter the site of onset, an EMG will show abnormalities. It may not be definitive - the whole clinical picture needs to be taken into account - but it will not be normal.

see this link from MDA neuros:

http://www.mdausa.org/experts/question.cfm?id=1048
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Postby Pole on June 15th, 2004, 2:02 am

To: Theydontbelieveme

When will you have your emg? I hope after normal results you will stop to convince yourself that you have ALS.

Best wishes
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