Reporting In: Valuable Info Ahead

Hello gang,

Back just to make a report that might be valuable. I still intend to remain off the board on a regular basis, as I am much better off when I don't spend time here. I also fervently disagree with some of the omnipotent pronouncements on health advice given here, I think it's extremely irresponsible, but anyway that's not what I'm here to bring up.

First, some of you might remember I was having really bad tongue twitching. I went off the benzos--the class of drugs which include xanax, Klonopin, valium, ativan, etc.--and my tongue twitching has greatly decreased, like by 80%. It was a gradual but very real decrease and continues to abate. Other twitching is much less also. There is little doubt in my mind, that in my case, it was related to the benzodiazepine drugs. I am also taking an SSRI now and have less anxiety due to that, but I'm pretty sure that had less of an affect than the eliminating the benzos.

Also, I noticed something interesting about my incidents of jaw fatigue while chewing and sometimes tongue fatigue while talking. It tends to come after not having eating in several hours. One day I was eating a chewy crust of bread with dinner and felt the fatigue quite noticeably. I was distracted from dinner and resumed eating about half an hour later and the fatigue and weakness was completely gone. I replicated the same results the next day. I was dx'd with borderline hypoglycemia several years ago and am waiting for results from new tests. My doctor said it is very possibly consistent with hypoglycemia... Anyway, to me, it seems more likely that signals a metabolic thing like low blood sugar. I can't think of why jaw fatigue of neurological origin would get better during the course of eating.

Over and out. Take care.

Oh Basso, that fell on deaf ears! I thought it was very funny. Shall we start making lots of impotent health prononcements from now on?

Dave Y, glad you are OK. I totally understand why you keep off the boards.

Diego4Life

ydav3yat3s, me thinks you are fibbing a bit.

First of all, no one on this board has told people NOT to see at least ONE doctor to get things checked out. I've seen Basso recommend seeing a doctor and telling people himself that we can't diagnose folks over the internet.

In the post that you are referring to, lest no-one take your word for it, a person on this board had SUBJECTIVE drooping of the eyelids and weakness of his lips, and had already been SEEN by his doctor. He did not have facial paralysis as you implied. You practically incited a panic by saying he probably had MG. And you call the REST of us irresponsible? If you ask me, the entire misunderstanding became all about YOU showing US how much you know about myasthenia, and certainly not about concern for this poor chap who thought his eyelids were drooping. He turned out to be fine, as you know.

Anyway, you are comparing apples to oranges here. Basso is addressing people who have already seen a doctor, and another doctor, and perhaps can't keep themselves AWAY from doctors, only to hear the same thing...that they are completely fine. I'm sure he does his homework and reads a person's history before he posts, which, in the case above, YOU clearly did NOT.

I'll tell you what is truly irresponsible. Visiting a message board EXPECTING to be diagnosed without seeing a physician. And, treating the medical advice one receives from unqualified lay-persons as gospel. Even if I spoke to a physician online, I would still not trust him/her over a qualified MD performing a good clinical exam. That would be pure recklessness on my part.

And so, if, as you say a person who really had **S was given the impression on the braintalk forum that he didn't, and believed it without checking things out thoroughly on his own; why, he had no one to blame but himself. I don't know the details of the unfortunate individual you are referring to, but if he opted not to see a physician for his symptoms, then it just doesn't get to be your fault that he was misdiagnosed. And, if he was seeing a physician, then the misdiagnosis would be on the doctor's head, not yours.

Besides, if I were in his shoes, I'd personally be grateful for those few months I'd been led to believe that I was okay. Because once the death sentence is pronounced, it isn't as if there is anything pro-active you can do about it. Other than make out your last will and testament. But that's just me.

Your wisdom and advice is appreciated by so many on this board. I've personally always been especially grateful for your balanced, level-headed contributions to the whole Lyme debate.

Just because you and EyeoftheWild take a different approach doesn't mean anyone who disagrees with you or prefers EyeoftheWild's counseling style over your own is "drinking Kool Aid." There is plenty of room for both of you here. We can all balance each other out quite nicely if we are willing to put the needs of fellow sufferers over our own prideful agendas.

Are you really so easily insulted and self-important that you would allow a silly disagreement to prevent you from helping people in need? If so, then I bid you "good luck," and... "goodbye."

Sue

I think we would all agree the inevitable "debate" threads may "spice things up" for a while, but become the most useless ones on here (of COURSE, that's my humble opinion - buyer beware). The fact that NO ONE, not the medical community, nor scientists, nor us, has ANY definitive answers on what this is, or how to treat it, or how it will progress or not BY DEFINITION precludes any of us from engaging in any real debate where there is a RIGHT ANSWER or a WRONG ANSWER on here. What this COMMUNITY is left with then, are the natural things you would expect from a community - support, information, personal experience, support, wisdom, support, you get the drill. I will say again I STILL don't understand for the life of me those who venture here seeking a debate or criticizing those who share personal experiences - who feels they have that right, and to what end is that discussion taking place???! Until I figure out a reasonable answer, I refuse to take part.

Thus, I'm not even going there, as there is no point. The fact that the bulk of your "rebuttal" to me ignores what was actually said RIGHT IN MY POST, leads me to believe you didn't actually read it, and just glanced at it and got a flavor for it. The "Cliffs Notes" on it, in case you care: the "sugarcoating" applies to those stuck in the spiral AFTER all of the external workups that are possible have been exhausted - NOT before or in lieu of. No one, myself included, is sugarcoating anything in lieu of first establishing a firm basis and foundation around a thorough medical workup and diagnosis (my god, why am I even repeating this??? ) - however, MUCH good and sound advice, counsel, support and personal experience IS being shared to/for those who are stuck well beyond the point where that process is over - leaving only the effort to repair the impact on your psyche and livlihood, and trust in what you KNOW. I stand by all of that 100%, and have the collective experiences of hundreds on here (and no longer here) to support it.

Take any tone you want - if you review ALL of my or most any other poster's posts on here since day 1, it will be obvious that this supposed "sugar-coating" has not been a constant, pre-programmed theme for any of us. I was scared, angry, lost, in need of support, etc. just like anyone else. But I don't suspect you've checked that out, and that is a shame. You have missed a number of very meaningful, very telling progresssions in a number of your "friends" that just might spell something out for you and adjust your perspective. What you actually choose to do is yours and yours alone to decide.

I suppose the thought that every time there is an unknown event in my body, I should only rely on a doctors' judgment to assure me everything is OK might have appeal to some - I believe most likely United Healthcare, Aetna, MetLife, Aflac (I mean, someone's got to keep the duck on TV...), etc. I gave them 30 long months of my life and choose to no more with respect to **S. And yes, I am still smart and savvy enough to figure out ON MY OWN that if something new, different and sufficiently "abnormal" (by my own defintion and mine alone) enough comes along that is unrelated to my fear of **S, then I should make an intelligent decision to seek medical advice (heck I saw my GP the other day for a wicked rash - who wouldn't?). But if they diagnose me, treat me, and send me on my way, then I DON'T HAVE TO KEEP SPINNING BACK ON IN EVERY MONTH UNTIL IT GOES AWAY JUST TO BE SURE DO I??

It is sad to even acknowledge, but this site DID lose one of our own - a young woman who was so troubled by her bodily symptoms, her doctors' lack of answers and perceived concern, and her "downspiral" into physical h*e*l*l that was taking place, she had lost hope. About all she didn't stop doing was seeking clinical answers - specialists in Houston, neuros in university centers. She PM'd me twice after my Mayo posts (were those SUGARCOATED ENOUGH FOR YOU DAVE??) to wish me luck, and tell me she was running out of hope...

And then she killed herself.

Months later, for reasons I still don't understand, her daughter PM'd a bunch of us to let us know that she was gone, and that the biopsy revealed nothing was wrong. She suffered from a severe mental disorder and depression. In one moment, I was consumed with sadness, remorse, anger, confusion, and yet yes - recomittal to what I already had FINALLY UNDERSTOOD. There is something sinister here I MUST get on top of, but it is not a disorder for an MD, or a disease that will show up on an expensive test. To the extent the sugarcoaters on here want to hammer away on that area, and paint a picture for those needing support and reason and direction, more power to them. And no - none of that is in lieu of common sense - IT IS COMMON SENSE.

If you presume I have nothing better to do with my time than pop on here, slap the blinders on, and mislead people down a primrose path that has no basis nor merit, then I suspect that alone gives me a fairly vivid picture of what your viewpoint and attitude toward this board in general is. Something brought all of us here, and something will lead all of us to eventually go. If it is that driving you away from here, I cannot be held responsible, and I won't lose a night's sleep over it. There are more meaningful, and valuable ways for all of us to be spending our time on here than worrying about that.

Best wishes for a continued "recovery" to all.

JG

JG,
That is very much what I wa trying to say. I just can't say it as well as you.

Good post!

17Wildcat17 -

I'm sure you've figured it by now - they pay me by the word... )

You say it just fine - you are a valuable member of this board, and thanks for the support.

JG

Well, in case Dave doesn't come back, I'd point out the following on his behalf:

1) Having looked again at his "MG" post, he told someone who was complaining of sudden ("since my last post...") facial "droopiness" and wanting to know if it was MG, that it could be - but added that it could also be many other things. Dave also asked the original poster if other people could see the droopiness, and advised the person to see a doctor (but be less concerned if others could not see it). This is all perfectly reasonable advice. Perhaps Dave might have posted differently if he had read the poster's previous contributions, but does he really have a responsibility to do so? Besides, the advice is still reasonable.

2) Plainly, he is not saying "don't trust your doctors", or anything like that.

3) His chief complaint is that people who post in a manner like his - which I would describe as cautious rather than negative - seem to come in for unwarranted criticism.

I make no comment on his suggestion that people tell others not to worry too often or too easily.

Don't get me wrong, I think people here do a great job. It's good that people want to help and support each other mentally, as well as addressing their questions about BFS. But I can't see anything in any of Dave's posts that is either factually wrong or unduly negative. And some people actually get MORE comfort from this kind of dryly analytical approach.

Vive la davefference.

Tammie,

No, I apologize, I shouldn't have written those things to you. It's not you I'm worked up about.

dave,
I would wager that I "pick up on" subtlety much better than you do yourself. Oh-and did I quote you correctly or are the quote police going to bust me?

Subtle, like your condescending tone which proves your arrogance, or the sarcasm in your first post which proves that YOU were on a personal AND nasty offensive FIRST, not EyeoftheWild, PG, 17Wildcat17, or myself.

But I'm done with this. Your arguments are weak, tiresome, repetitious and, since you have left the board anyway, why bother?

Perhaps I should be a ninny, and threaten to leave the forum over this myself...

How's THAT for subtle?

Sue

Another one falls.

And no, you most certainly did not quote me correctly. But that is just part of your up-is-down argument style.

Unfortunately, Julie isn't responding after her reply to me. Here is what I wrote to her.

Julie,

I never wrote twitching was his first symptom--do not misrepresent me. What is it with this place? I wrote that he was never given a benign dx, but that this crowd would have assured him nothing was wrong. I stand by that statement. And I did reassure him in a post that he was fine. That does not mean he wasn't a great guy, I also exchanged PMs with him. He was a spectacular, and I'm deeply offended that you are attempting to make it look like I disrespected him. That is really underhanded and very untrue and very self-serving on your part.

Go read the first posts regarding Ernie. He most certainly did come to the board with twitching as one of his first symptoms, and he was most certainly hoping he had BFS. He also had a limp as another first symptom, perhaps the first, but we assumed it was from a basketball injury due to a couple strange falls on that hip on the basketball court. Some of us discounted the limp (weakness) for that reason, and it was an error to do so. His first EMG was not entirely clean. I remember him commenting on how he twitched all over, all kind of twitches, some in places he thought you couldn't twitch.

After his ALS dx he shifted over to the ALS forum, and spent a lot less time at the neuromuscular site, but still checked in sometimes. I'll be honest, I don't remember him spending much time reassuring people how different his case was from BFS. I do recall, imperfectly, the long diagnosis procedure and how we were all rooting for him and how he often at times believed it was BFS, or at least hoped it was. He did not just show up with ALS and then start reassuring people it's not at all like BFS. That's just not what happened.

It's a painful story, and yes a little scary in some ways, but unfortunately it's the truth. However, like I have always said, even his case does not have any bearing on us twitchers. The lack of any weakness with twitching is hugely significant. Get a clean bill of health from a neuro and you're set. Ernie had neither of these--HOWEVER, his case was not so obvious that there was no doubt in the beginning. That is the lesson that many here refuse to aknowledge, that there is cause for caution sometimes.

I would have prefered not to go into specifics, but if you're going to accuse me of such things I feel like I have to.

I'm really getting *beep* at all this twisting of what I write.

Dave, I didn't mean to misrepresent you. It seemed to me that you put a spin on it to emphasis that twitching was one of his first symptoms, and down play that he also had weakness. And plus, what's really wrong with having reassured him when he first came to the board. Who wouldn't wish for him that it was something benign?? But the fact remains that he wasn't the same as the rest of the twitching world - he HAD weakness, he HAD an abnormal EMG. He didn't go to 3 neuro's telling him he was fine and not to worry (like most other people on this board). Plus, Ernie was also not your typical medical/anxiety person either. Even if people on our old forum tried to reassure him (like any hopeful friend would) I don't think anyone wasn't also in the back of their mind very concerned for him. I was. And I do remember for a fact that even as he was going through all that he was - he was reassuring people that his symptoms were nothing like what the rest of us had. You just don't forget something like that when someone is unreal caring enough to do that.

So, again - I'm sorry if I misrepresented you. I guess I just didn't understand why you'd bring him up in the way you did - to me it seemed like it was to scare people. I'm sure I was wrong. Because even if I was on a neuromuscular forum and someone was there with *** presenting symptoms, I would not regret or feel bad about trying to reassure someone that there could be another explanation for his symptoms - so I don't know why you'd feel bad about having done that for him. Maybe I have again misinterpreted your post. So I again, I apologize.

Everyone have a great day - and don't give a second thought that Ernie had ANYTHING as a first symptom that you have. The old forum wasn't a community either - he ended up there because it was a "neuromuscular" forum. I'm sure the first thing he put in the search engine was not "twitches". So please, don't let this scare you, let it reassure you. Ernie would have wanted it that way.

And again to Dave - I am not here to make enemies. I do regret that my orig post was in a negative light towards you. I should have just added what my recollection of Ernie's case was, and left it at that. So I do apologize for having fueled any fire against you in this thread.

Julie

For fear of twisting words, and boring anyone to tears, can you please explain one thing in one of your earlier messages, so i can share in your enlightenment?

"Get a clean bill of health from a neuro and you're set"

I was, as you asked, very careful to quote you exactly, and will leave it to you to define for us all exactly what you mean/meant. However, if we are (or specifically I am) too dumb to ever really understand it, then don't bother wasting your time on me...I understand.

JG

Perhaps we could settle this with a competition?

Entrants must submit 500 words of "flowery prose" and undergo a 20-question multiple-choice exam on EMGs.

Each part of the competition will be weighted 50/50.

Stevepaul can mark the flowery prose, and we'll rope Eric in to mark the EMG exam.

Should anyone score more than zero, they get a round of virtual applause and a badge saying "I won the great BFS war of 2006".

Before we do that, could we please fully define what flowery prose is? I'd like to make sure I am not misinterpreting what is meant, and the contest just wouldn't be worth a darn without everyone understand the original writer's true meaning behind the term. That much has FINALLY sunk in.

Also, "drinking the Kool-aid" - anything that can be done to fill in some blanks on what that really means would be helpful for me at least - I understand I am one of the slower kids in the class, though I sure do throw around big words.

I now understand I should have been asking for guidance versus filling in the blanks for myself. I wish I had learned that a while back before wasting everyones' time.

So, once again, if you find it worth your while, anything you can do to elaborate on what you meant by "flowery prose" and "drinking the Kool-aid" would be quite helpful (carefully quoted from their original source). Then, I agree zEarthyRanger, let the games begin!

Thank you in advance for your help.

JG

JG...The following is from Wikipedia....I am pretty sure that he is likening everyone here to the Jonestown Massacre, not the LSD. Just bringing you up to speed. I am sitting back and enjoying this thread, is that bad??? I just always love a good debate.

ristinaL91


The idiomatic expression "drinking the Kool-Aid" was originally a reference to the Merry Pranksters, a group of people associated with novelist Ken Kesey who in the early 1960's traveled around the United States and held events called "Acid Tests", where LSD-laced Kool-Aid was passed out to the public (LSD was legal at that time). Those who "drank the Kool-Aid" passed the "Acid Test." "Drinking the Kool-Aid" in that context meant accepting the LSD drug culture, and the Pranksters' "turned on" point of view.

"Drinking the Kool-Aid" is also now closely associated with the 1978 cult mass-suicide in Jonestown, Guyana. Jim Jones, the leader of the Peoples Temple, convinced his followers to move to Jonestown. Late in the year he then ordered his flock to commit suicide by drinking grape-flavored Flavor Aid laced with potassium cyanide. In what is now commonly called the "Jonestown Massacre," 913 of the 1100 Jonestown residents drank the brew and died. (The discrepancy between the idiom and the actual occurrence is likely due to Flavor Aid's relative obscurity versus the easily recognizable Kool-Aid.)

One lasting legacy of the Jonestown tragedy is the saying, "Don’t drink the Kool-Aid." This has come to mean, "Don’t trust any group you find to be a little on the kooky side," or "Whatever they tell you, don't believe it too strongly."

Helpful ristinaL91 - but my gosh, aren't you running a great risk trying to put words in someone's mouth? I sure learned my lesson - I dunno, I'll wait for the "official" explanation. (editor's note - this particualr use of quotations was used to mark emphasis, NOT to literally quote another...)

I'll of course be happy with either - a full explanation from the original poster, or to elaborate on Wikipedia's fine definition - what specifically is it that we are not to trust in?

JG

ristinaL91 - popcorn, ice cream or a stiff drink while you sit back and take it all in? Can't go wrong with any!

Huh? I thought drinking the kool-aid was from Woodstock, and more or less meant buying into a falsely euphoric alternate reality.... I didn't mean any comparison to Jonestown whatsoever...

Julie,

I'm sorry for replying so strongly.

As I recall, Ernie arrived with twitching and a limp. He hadn't had any EMGs at that point. I do believe it was wrong to reassure him in the manner many of us did, and I mean specifically telling him he didn't have ALS when it was too early to tell. That is different, more complicated than simply an act of compassion. There's nothing wrong with compassion and reassurance, as long as it's resonsible. For example, even the Mayo study uses cautious language.

Yes, he was different from the rest of us, from the start, but my point is that it wasn't by much, and that if he would have come here he also would have been repeatedly reassured of a benign outcome judging by the current climate on this board. Sometimes, in the earliest stages, you just can't tell over the internet. Yes, a neuro can tell, or at least knows best when a dx can be made. But we can't.

Hey, if that's what people want to do here, fine. But it's irresponsible and I think cruel in its own kind of way.


Again, Ernie's is not a story that should scare people here, and I'm mostly talking about newbies. His was a rare convergence of unusual presenting symptoms and timing for an already rare disease, and it'll probably be a long time before another situation like that happens. Probably. But, if you worry about such things like I did, see a neuro and put the worry to rest, if you can. But in the meantime, if you come here with just twitching, be reassured that nobody to my knowledge has arrived at either forum with only twitching and gone on to get an ALS dx. Those are some great odds.

JG, congrats, you finally got one of my quotes right. However if you don't understand it, I'm afraid you're on your own. It's pretty basic English.