Ever notice...comments?

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Ever notice...comments?

Postby SLL on June 11th, 2004, 9:52 pm

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...
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Hello

Postby John on June 11th, 2004, 10:23 pm

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


John :D
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Postby TheyDon'tBelieveMe on June 12th, 2004, 4:51 am

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.
Last edited by TheyDon'tBelieveMe on June 13th, 2004, 5:45 am, edited 1 time in total.
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Postby dwl on June 12th, 2004, 5:26 am

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.

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Postby TheyDon'tBelieveMe on June 12th, 2004, 6:14 am

dwl...what about the confirmed ALS patients in the BrainTalk forum that had clean EMGs initially but later were diagnosed with ALS?
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Postby dwl on June 12th, 2004, 6:53 am

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.

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Postby TheyDon'tBelieveMe on June 12th, 2004, 7:02 am

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:

http://brain.hastypastry.net/forums/sho ... =clean+emg
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later

Postby terryg on June 12th, 2004, 10:35 am

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?

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thanks

Postby SLL on June 12th, 2004, 11:07 am

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.
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Postby TheyDon'tBelieveMe on June 12th, 2004, 3:02 pm

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?
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thanks

Postby SLL on June 12th, 2004, 3:28 pm

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
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Postby garym on June 12th, 2004, 3:48 pm

SLL,

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

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Postby TheyDon'tBelieveMe on June 12th, 2004, 3:48 pm

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.
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Postby SusanSid on June 12th, 2004, 4:51 pm

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 :)
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Thanks

Postby dont on June 12th, 2004, 5:16 pm

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!

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