New to Forum--ALS Concerns

I am new here an have posted just a little ...and there seems to be a general consistency about a few things...we all seem to go to some of the best neurologists in the country who, often, specialize in ALS and neuromuscular issues. We have all been told PROFOUND weakness is the hallmark of ALS, not twitches. Our "symptoms" of "lump in the throat" and perceived weakness have been responded to with "it is anxiety". It has been mentioned these neuros can "spot worrisome pathology as it is walking in the door". We hear from them that ALS is insidious, it does not wax and wane, it is progressive, the weakness is obvious, etc.... an EMG would spot trouble right away since the disease is in process at least 5 months before symptoms, etc....

Then why do I keep on seeing/reading - in other posting places like BrainTalk communities and other internet stories - about people with ALS who say things like "mild hoarsness that came and went was my first sign...took them 2 years to diagnose me", "have had speech issues for 5 years", or several doctors told me stress, or back issues or surgeries were had for neck issues, etc... had a clean EMG and then ALS, etc... Are these stories incorrect? am I believing too much of what I read? I know everyone is different, and presentation of a disease differs with each person. I also do not know the true history of these stories nor do I know the doctors they initially consulted or the real tests they had.

I guess I am just stressing with the "what ifs" tonight and am wondering your thoughts. Have you read lots of these types of unusual presentations on some of the other posting areas...and what do you make of it? I feel horribly for folks diagnosed with it...truly horribly...

Do not believe everything you read . This is the internet, I don't think I have to say anything else .


John )

SLL...The reason you see such contradictory information is because people don't always want to believe the truth. ALS frequently DOES wax and wane. And early bulbar ALS signs often include symptoms other than slurring. In fact, frequent slurring doesn’t occur until quite some time after onset of bulbar ALS.

I once followed a thread in a BrainTalk neurology forum (not the ALS forum) where a guy described very obvious early symptoms of bulbar ALS. Two forum regulars told him that what he was describing couldn't be bulbar ALS. I privately posted to both those guys that they were absolutely wrong and I backed it up with a study. Those two guys were very rude in their responses to me. Subsequently, the guy DID turn out to have motor neuron disease.

I think some people (most?) see forums as support groups to help alleviate people's fears that they might have ALS. Personally, I think it would be more useful for forums to focus on facts, regardless how much those facts may NOT alleviate a person's fears.

That said, keep in mind that no one here has yet turned out to have ALS.

2 things to remember:

1. There are NO cases documented in the medical literature of patients with normal neuro exams and emg's going on to develop als. None. Zero. Niente. Believe anecdotal stories posted on discussion boards if you like.

2. ALS can easily take a year or two to diagnose. In the early stages, the emg will show early abnormalities which are not at that stage diagnostic of als - it takes time for all of the diagnostic changes to appear. That's why some patients will say that they had symptoms for X years until they were diagnosed. Note that these patients' emg's will have been abnormal right from the start.

That's why I personally think that it is important to get an emg as well.

David

dwl...what about the confirmed ALS patients in the BrainTalk forum that had clean EMGs initially but later were diagnosed with ALS?

That's my point - we only have their word for it. Something that unusual would make it to a medical journal. I suspect that they are relating only part of the story and their medical records might tell a slightly different story.

If I'm going to have the sh*t scared out of me I'm going to wait until it's based on something I read in a reputable peer-reviewed source rather than some unverifiable half-story.

That's just my take on it - ultimately it's up to each person to decide on the weight of evidence for what they choose to believe.

David

All instances of every disease aren't published in medical journals. I don't see why the patients would have any reason to fabricate anything they said. Take a look at his thread:

I posted earlier on this same topic and I was surprised to find out I was wrong when I actually read the study. On a pub med search I read the abstract From Benign Fasciculations & Cramps to Motor Neuron Disease. NEUROLOGY, 1986 July 997-998. I assumed because they labeled the study Bengin Fascics that they ran an EMG when the patient first presented. How else could they label it "benign"(I reasoned). However even though the patient could feel his fasciculations and complained about them it was omitted if they ran an emg on the patient. I can only assume they did not. The patient did devlop ALS after four years. The author was trying to make the connection between ALS & BFS. There have been many other studies since that time presenting far more information with numerous patients that they are not connected and represent a different disease process. I would agree with dwl if there was a documented case with a clean emg it would be NEWS and wind up in at least a case study.

Now I did find a study with a clean emg & fascics but not a normal neuro exam after a year winding up with ALS and it is personally scary to me.
The Overlap of Amytrophic Lateral Sclerosis & Frontotemporal Dementia.
I would like to say............ What was I writing about?

Take Care
Terryg

Thanks all. I am just trying to get my arms around how many of the world-reknowned neuros we all here seem to see - mine is the medical director of the MDA/ALS center here in San Fran and is one of the best - can you look us straight in the eye - sometimes even without EMG - and say "this is benign, you don't have it" (of course I pushed for an EMG!). AND their favorite fall back is "anxiety". I mean, it is without question what they all say after just looking at us in office for 30 minutes.

I want to believe them, and it seems by all the folks on this forum who none have gone on to receive an ALS diagnosis it should be believable, I just get scared when I read some of these other stories. I mean, early bulbar are the same exact signs of post nasal drip or a cold! At the CCF Neuro site, they say that if you really had bulbar onset, you could not get your tongue out of your mouth, you'd be frequently choking on even just liquids and it would be obvious there is something very wrong...and if most of those cases those folks live only 2 years, how can it take "years to diagnose". I am seeing everything from the man who started slurring after he awoke from a nap and being diagnosed 2 weeks later with bular als, to someone on Braintalk who says they have had speech problems for 5 years, no other issues, an inital clean EMG , but then abnormalities only on the arms, tongue was "normal".

It seems the big factor here is that a normal in office neuro exam...I do not think I have heard of ANYONE who had a TOTALLY normal in office exam, to then have something pathological. It just seems our doctors - again many of them do only ALS every day of their lives - are so definitive in their assessments, how can the disease really be so "all over the place"? I guess it could be, but I guess I just want some affirmation to not worry everytime I feel a little hoarse after a long day....

TO: They Don't Believe Me - what were the guy's symptoms who went on to have bulbar and why did the forum regulars poo-poo it? Interestingly, everywhere I read, the slurring seems to indeed be the most common first symptom that sends someoen to the doctor, initially being mislabeled as possible stroke. It is much rarer for bulbar to present with swallowing or breathing issues.

And I come here for one thing - I want to hear all the facts and info that the neuros themselves have shared to our group here in their experiences with these diseases.

You're told that you have anxiety because the changes you're experiencing don't rise to the level of disease. That doesn't mean that anxiety is causing your problems, what the neurologist is saying is that you're anxious over your condition. He is being condescending to you. He's trying to downplay your symptoms hoping that you will think that it's all in your head and then you'll ignore the symptoms no matter how limiting they might be. He can't help you, nor can he give you a straight answer, so his strategy is to make you feel like an idiot.

The guy in the neurological forum reported a reduced speaking rate as his first bulbar symptoms. The forum regulars poo-poo'ed him saying that only slurring could be ALS and that slowed speaking rate had nothing to do with it. They're dead wrong. In fact, slowed speaking rate is the earliest indicator. Some bulbar patients go years before having intelligibility problems. From a study:

"...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."

That said, if you've been twitching for five years and there is no real impairment of speech and no real weakness, then you don't have ALS. How bad are your non-twitching symptoms?

thanks for the info. My neuro was being a little "father like" in his last discussion with me...he just says he wants me to enjoy my family and stop wasting prescious time. He said he can feel my tension and how unhealthy it is...I really think he is trying to help.

Only other non- twitching symptom, is in the last week I feel like I have a lump in my throat. It is pretty constant, but no choking issues, can guzzle an 8oz glass of water no issues, can do all the neuro exam tongue/face/mouth things. No slurring, slower rate of speech, etc.... I told my neuro about this and he says it is classic anxiety - globus hystericus it is called. I did go to the ENT who said it all looks normal to him, but I think I am going to go back to the ENT if this feeling continues much past another week.

One thing that unnerves me is, of course right after I get up the nerve to finally get an EMG, my neuro did my arms and legs only and said "this could not be more normal". he then stopped...no bulbar muscles...and then of course I get twitches in my neck and face and this globus thing

SLL,

Do a google search on "globus hystericus", that may shed some light on the "lump in the throat" feeling.

Gary

Bulbar patients complain of speech issues. If you don't have those, then there was no reason to check bulbar muscles. You've got five years of twitching without weakness. Your only non-twitching symptom is a lump in the throat since last week. You're fine.

I read the above posts with interest. Yes, we all are to take responsibility for our own health, seek answers, ask questions. I only caution people not to trust a post as God's honest truth.
On this website we had a person who stated they had ALS, scared the hell out of everyone. Ended up...in that person's mind they had it, but there was no diagnosis as the "doctors were wrong". It created a great amount of worry for everyone. Lesson learned, always always be cautious reading a post that sounds odd, doesn't make sense and isn't backed up factually.
Many of us on this website have become friends and know each others history fairly well and there has not been one ALS diagnosis. Yes, it's does exist, it's a horrible disease and we have all worried about having it at some point. I don't want to show disrespect for those in the world that do have ALS. It just happens the BFS website regulars haven't come across one here.
I just want to stress to others to be wise in what you read and what you believe.

Sue

I need that. I have been freaking out all day reading this thread. I do really well and then boom, someone starts a post like this and it freaks me out all over again.

But I agree with SSL, the info is conflicting, confusing and scary!

Karen

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;.... 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.

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.

CapnCrunchy_2 -

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.

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.

To: Ezecon75

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.