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Postby TheyDon'tBelieveMe on June 15th, 2004, 2:41 am

I'll have the EMG in a month or two. I'm intentionally putting it off so that my condition (whatever it is) is sufficiently advanced that I can be convinced of the EMG's results; i.e., so that I won't later think that it's too early for the EMG to show ALS.

If that EMG comes back clean will I then believe I don't have ALS? Yes, I think so.
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Postby dwl on June 15th, 2004, 3:05 am

good.
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Postby puggriffey on June 15th, 2004, 7:26 pm

This is the most ludicrous exchange I've ever seen.

TDBM - grow up. Period. You needlessly scared a lot of genuinely concerned people, and your subsequent rants combining circular logic with a conspicuous use of convenient answers that have been shaped to fit the needs of a particular argument is a waste of your time and ours. If you are uncomfortable with this situation you are in, as are many of the rest of us, fine. I wish you the best and am confident that your answers will (eventually) bring you relief and comfort. Until then, give us all a rest, and lay off the thread links, anecdotal "wink, wink, nod, nod - guess what I heard/read over here, there and everywhere" garbage and understand this is serious stuff, and a lot of good people are doing a lot of geunine worrying here that requires support and comfort and fact based exchanges. If you're really convinced your posts weren't reckless, you've got a bigger problem than any symptoms you're experiencing right now.

By the way, in the adult world, posting a bunch of garbage and slapping a qualifier on the end that disclaims your post and reverts back to a "you probably don't have it" is just as immature as if you never included it at all. If we needed to see the brain pastry links, you might as well have thrown all the other similar internet ALS posts and MS posts while you're at it. In the end, you know what point you were trying to make, and this isn't a site that requires a journalistic "better present both sides to every story approach" simply to say we did so. Why we've spent 34 messages debating this is unclear to me, so this will be the last I weigh in on this.

There are a lot of unfortunate people in the world that have been afflicted with this terrible disease. We all know that, and my heart goes out to them. I sincerely pray for all of us that none of these good people here ever experience this first hand. What I do know is that by and large, not one of us has ever had the misfortune of working with or even meeting an ALS patient in person, while the doctors you are busy questioning base careers and livlihoods not only on working with and understand these people, but on recognizes their symptoms, understanding the technical complexities of a meaningful diagnosis, and investing themselves in years of technical training and expertise. That alone is enough of a basis to assure me and most that it is not irresponsible to belong to a site that doesn't feel obligated to post every thread and link to conversations filled with conjecture, second hand anecdotal information and "possible" anamolies that are extremely rare and hard to confirm. It's just common sense, and frankly, in my humble opinion, what is called for here.

Best wishes to you in a continuing recovery, and I hope you find peace of mind. Please allow others to do the same.

JG
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Postby Bradford on June 16th, 2004, 1:50 pm

To: Theydontbelieveme

No offense, but your case is “anecdotal” as it gets!

I quote from your post in brain talk where you convincingly communicate the fact that four neurologists ruled out ALS. I understand your point about not trusting their assessment because they didn’t do an EMG and you seemed to expect it, however, that was only two of the four that you saw. You quote the following in the brain talk forum:

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.


In contrast, I would now like to quote you from your recent reply back to me in this forum:

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.

What can easily confuse a reader is in the first post you paint a picture of four different neurologists who absolutely ruled out ALS in your case. I think you spelled it out like this… R-u-l-e-d-o-u-t. But in a different post, your actually paint the opposite picture about your neurologists who by their own admission won’t consider a diagnosis of ALS until they see true impairment and again this was only two of the four that seemed to make that statement by your account.

Either they ruled it out completely or they didn’t and I for one see in the later post that these “experts” didn’t even come close to making any attempt of diagnosis FOR or AGAINST ALS. How can you say they ruled it out? Thus we have yet another anecdotal incidence but this one is where physicians are now officially ruling out motor neuron diseases without electrodiagnostic studies, physical exams and what ever resources are available to the physicians.

How can we consider accepting any of the your contributions to any topic when in your own personal experiences you have an inclination to contradiction? Do you expect anyone to believe that four neurologists actually ruled out a severe motor neuron disease by simply blinking at you. Even more disturbing is how you suspect a couple of renowned neurologists belong to the good ol’ boy club and watch each others backs at the peril of the patient.

Best of health to you-that is as much as the internet will allow you!


.
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Postby TheyDon'tBelieveMe on June 16th, 2004, 2:35 pm

Bradford...As for the "ruled out" diagnosis, those are their words, not mine. They actually said "ruled out." As for the apparent contradiction, what I meant about the neuros not considering a diagnosis until true impairment, I meant that they won't factor in my slurring until they actually hear it as impairment. So, as far as I'm concerned, there's no way they can have an accurate diagnosis. Right now they're just guessing. Especially since they won't even do an EMG. The other two of the four neuros didn't say "ruled out," they admitted they couldn't rule it out. In defense of the two that did rule it out, I guess that techincally they can do that since lack of ALS diagnosis means ALS is ruled out.

I fully understand that you think it's disturbing that I suspect one (not a couple) renowned neuro of not doing an EMG because he didn't want to contradict his close, local colleague. However, I was there, you weren’t, and I'm a good enough judge of human behavior to know that he wasn’t going to contradict his buddy. "Oh, you saw [colleague name]? Then what do you want from me?" "You can do pushups, you don’t have ALS." No reflexes. No strength. No EMG.

I’m not trying to make my personal experience an issue here. It shouldn’t be. My experience is unique and anecdotal and shouldn’t be used as a guide for anyone else. You guys are the ones dissecting my posts about myself. So, I’m forced to defend my credibility. I think I’ve done a decent job of providing sound information to forum visitors.
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Postby garym on June 16th, 2004, 3:39 pm

I vote that you guys let this thread die a friendly death. Let's get back to BFS.

But if you don't, I just keep reading :lol: ............

Underwhelmed,

Gary
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Postby Jenn311 on June 16th, 2004, 9:01 pm

I heard this funny thing:

"Do you know what dog food tastes like boys and girls? Exactly like it smells, Deeeeelicious!"

:wink: J
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Postby Pole on June 17th, 2004, 4:28 am

TheyDon'tBelieveMe wrote: since lack of ALS diagnosis means ALS is ruled out.


Of course NOT !!!!!

If ALS is ruled out that means that there is no even 0,1% possibility (in doctor's opinion) that you have ALS, but lack of ALS diagnosis is not the same. There is a lot of people without diagnosis and in their cases ALS is not ruled out!

I'm sure you heard about "suspected ALS" or "propably ALS". These are not diagnosis but ALS is not ruled out.

regards
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IM GLAD WE ARE ENTERTAINING THE REST OF YOU!

Postby Bradford on June 17th, 2004, 3:43 pm

To: Theydontbeleiveme

Your right! your experinces shouldn't be an issue just as those you sight shouldn't be an issue. I have been pushing you with reason in order to size you up. I commend you for holding you ground and to your convictions!

Please understand that many have thanked me for "pushing" because of the anxiety and scare that resulted from your hyperlinks. You did come under attack and while I was one of them, I am also able to stand beside you and give you support.

I really appreciate your responses and explanations. You didn't owe it me yet you stood your ground. If things got tough, I would rather crawl into the trenches with somebody like you who will fight back than those who site dog food? I don't own a dog therefore I've neither tasted or really smelled it to draw comparisons.

Ironically, you did site Duane's case and through all this we learned that his abnormal EMG findings did not result in an ALS diagnosis and by his latest account is actually improving and doing well-very happy to hear that! This serves as the best lesson in siting anecdotal cases.

As much as it seemed a personal attack, I really wanted to ask questions about your situation because there seemed to be contradiction. Not to say that your dishonest, but to show that in any anecdotal case on the internet, there are more things concerning facts not stated than there are in print.

I believe that you do want to contribute in a way that has the GREATEST benefit to visitors and members alike. I hope that you would agree that siting anecdotal cases is less beneifical than siting medical journals and puclications.

And finally to put this to a friendly rest, I don't think that we can separate BFS and ALS because they are two sides of the same coin. I think ALS/BFS comparisons should always be made in context of EMG, physicla exam, physiology and those things that exacerbate symptoms.

On the other hand I don't want to listen to everyone's daily BFS twitching report nor hear of somebody's neighboor step dad whos boss fired a guy with normal EMG and was later dx with ALS.

I wish you the best and hope that you will report your EMG results and give us a report on how all the facts fall into place in your specific case.

End!
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Postby TheyDon'tBelieveMe on June 18th, 2004, 2:39 am

Thank you for the kind words. Believe me, I fully understand everyone's attitude toward my posts. If I were you guys, I would probably be attacking me too. I'm sure that my refusal to let go of the ALS possibility makes me look irrational. Even one of the neuros (who didn't do an EMG) told me, "I'm about to give you some very good news, but why do I get the feeling that you won't believe me?"

However, unlike many ALS-obsessed forum visitors, I'm quite rational and my anxiety level is absolutely zero.
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Postby jcavan4125 on June 18th, 2004, 6:11 am

To TDBM

Denial is not a river in Egypt. The first step toward recovery is recognizing the problem. You are so close, just step into the light!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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