Carol's Story...you won't believe it!

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby Craig on June 22nd, 2003, 1:18 pm

Carol, I am terribly sorry to hear about your diagnosis, especially after all you have gone through these past couple of months. You are the last person this should be happening to. Our thoughts and prayers are with you.
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Postby Nole on June 22nd, 2003, 5:12 pm

I am sooo sorry to here of your recent diagnosis. I am thinking of you and praying for you everyday. Be strong and remember we are here to support you any time you need it!
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Postby kim on June 23rd, 2003, 7:15 pm

Carol,

You are in my thoughts and prayers. I have seen what ALS can do to a person (my Grandmother had it) I have also seen what a positive attitude can do for a person with ALS, and those around her. My Grandmother lived her last years to the fullest. She laughed, cried and loved harder than ever before. We have to make the best of what GOD gives us.

I have been reading a lot about a new drug called "Thrombopotien". It looks promising in the cure/slowing of ALS. Look into it, and every other option. Others believe that ALS is "bacteria" based and that mega doses of Antibiotics can help. Others have seen inprovement with strick diets. Braintalk.com has lots of stories and advise. I'm not a Dr. nor are any of them. But if it were me, I'd look into everything! Give it your best fight!

We will all be in your corner.

If you ever need a friend, I'm here!

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Postby Arron on June 23rd, 2003, 11:08 pm

OK, I'm going to "chime-in" here and put things back into perspective.

A: NONE of us on here are doctors. You do NOT come to a PUBLIC web site for a DIAGNOSIS, period! All ANY of us can do is offer suppoort and share our experiences and PERSONAL knowledge.


B; Carol showed signs of ALS and with that, she ended-up having ALS. That does NOT mean any of YOU have ALS or that your BFS will turn into ALS. You HAVE to look at the statistics and medical data. NOT one single person with TRUE BFS has gone-on to "develope" ALS. What Carol had was ALS from the get-go and it was simply misdiagnosed by doctors that blew her off by "glancing" at her medical data. Who knows, maybe her EMG's were "glanced at" too, like most of her other medical data was? Can any of you say one way or the other? No way! Can Carol? No way! Can I? No way! Only her doctors that did the tests can say that. And even so, there is always the chance of a mis reading. I mean, have you ever heard about anyone having a test on a tumor that was "thought" to be benign and it ended up being malignant? Of course some of you have and so has just about everyone else. Does that mean the tumor changed into a malignant tumor? Nope. It was probably malignant to start with but was misread on the biopsy, as is the usual case.

C; I like the line she used "so much for Aaron's reassurance and research"... that's a good one carol! OK, I won't reassure anyone anymore. You ALL have ALS, OK? Is that what you want to hear? Is that the truth with FACTS to back it up? Nope. Am I a doctor? Did I examine Carol and sit down and discuss her symptoms she had as if I were a doctor? Nope. Did I see all of her posts with all of her symptoms and signs? Nope. So how can "I" be somewhet "blamed" for misdiagnosing her, when I never diagnosed her with anything to begin with? If you come here to get support, you are going to get it. If your symptoms show signs of something really bad, you are still going to get support, but I won't blow smoke up your butt either, and tell you you don't have anything wrong if I suspect or read a symptom that isn't in conjunction with BFS.
I have told many people to go see a doctor to get a true diagnosis when something sounded fishy. All I can say is I follow the facts and there is not one single fact or ANY data showing ANYONE with BFS developing ALS, and signs like atrophy are NOT symptoms of BFS.

D; Facts are facts and the only facts we have to go by are CURRENT medical data and experiences shared between BFS patients, ALS patients and doctor firends that spill information to some of us when we seek it. With that, have you seen ANYONE on this site (or ANY other site for that matter) develope ALS when they had no other OBVIOUS ALS signs, such as ATROPHY? Hello? What IS atrophy? It is wasting muscle tissue, which is about as clearly ALS as you can get!
Do any of YOU have atrophy or wasting muscles? So far, I haven't read about anyone with BFS having definate atrophy, have you? Probably not, because that is a symptom of ALS, NOT BFS!

E; I am sorry Carol that you ended up having ALS, but do not come on here and attack me or anyone else that has offered you support. There are literally thousands and thousands of people who are scared to the point of suicide because of BFS and the scares of ALS, and that is what I am here for. There were no sites like this when I came down with my twitches and was misled to believe that twitches were a sign of ALS. That is about as hogwash as you can get! It's like saying headaches are caused by brain tumors! Well, if that's true, Bayer, Tylenol and all of the other headache medications might as well close up shop because no aspirin is going to fix a brain tumor, and being that we ALL get headaches from time to time, it must mean that we all have brain tumors... well? That's about as rational as saying twitches are a sign of ALS!! All anyone on this forum can do is offer you support and try to help you through EXPERIENCE, which was learned by reading FACTS. If you were misdiagnosed, I am sorry, but don't attack me for it! I am not your doctor or anyone else's doctor! I just tell the truth with facts to back it up is all.

F; I am sorry that all of you got scared and are now in an uproar and panic over this post and thread. I got LOTS of private messages from previously stable BFS'ers that are now scared to death again. PLEASE remember the facts! Do YOU have atrophy? Are YOU unable to swallow or fall to the floor with cramps like Carol did as a first sign? NO! Are you weak and losing muscle tone or have wasting muscles? ... well, from what I have heard and read from all of you, the answer is NO. And that would point away from ALS all together. So please stay calm. There is NO reason for ANY of you to start worrying all over again. This was clearly a case of ALS as soon as the atrophy part was revealed and was backed-up by a dirty EMG.

G; There ARE going to be people from time to time that come on here that will indeed have ALS. I have seen one or two myself, BUT they ALL had clear signs of ALS, (dirty EMG, atrophy, twitches in line with what ALS twitches are like, weakness, etc.) NOT like any signs of BFS what so ever, so relax! ALS is rare indeed, but as I said, every so often you might just see someone with it and all you can do is offer your suport and shared information so other's can learn from your experience. Which is what we all do on here. Now, quit obsessing over it, be glad you don't have true weakness or atrophy or dirty EMG's and get on with your life, because BFS is NOT going to kill you or leave you crippled.
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Postby dave YY on June 24th, 2003, 12:49 am

Aaron,

You're probably going to delete this, but I found your diatribe to be shameful. Taking to task someone who recently got an ALS dx is pretty bad. Even if she sounded bitter toward you, she was right and you are wrong. Yes, it appears she had ALS from the start. But she also had a clean EMG (so she says), a few clean neuro exams (no weakness, and an hour and a half with a neuro is not anything it sniff at) and a BFS dx on at least a couple occasions. Her swallowing an atrophy developed later. That is very contrary to the opinion about BFS that you have been scolding everyone to conform to.

This is not about whether she had ALS from the start. Apparently she did. It's about the dx procedure, and whether (no direct quote intended) "nobody in the history of BFS has gone on to get ALS". We can parse words until the cows come home, but as the facts stand now she had a clean EMG and dx of BFS, then turned out to have ALS.

Now, let me adjust some of my post that may until now sound alarmist. Carol's story is a highly rare occurence. And it was INEVITABLE. It does not mean suddenly we twitchers have a higher chance of getting ALS. For whatever reason--shabby neuros, her terribly bad luck, whatever, doesn't alter the fact that her story is the extreme exception to the norm. If you have a clean EMG and clinical exam at any point in the process it's a very strong indictor that it's benign. However some neuros differ on when you're completely out of the woods (that is, they would not all concur with Aaron). But at any rate, of hundreds of people to come through this and other boards, she's the first. The odds are still exceedingly against ALS even before you set foot in the Neuro's office!
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Postby Nole on June 24th, 2003, 11:33 am

There is no need to attack Carol at his point, she is going through enough. Aaron- your points are valid but you need to see things from her point of view-a dxs of als. Can you imagine?? Im sure her post wasnt meant to scare us or insult you. She is under a tremendous amount of pressure. You are right, you are not a doctor but some view you as one, unfair but true. She was misdiagnosed...it was not Aaron fault but thje docs. But lets be kind to each other, especially Carol who needs all the support she can get!
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Postby Dale on June 24th, 2003, 11:52 am

I agree with you "Dave YY" - I hope Aaron does delete your post.

Do you have ANY IDEA how much help Aaron has been to us? Do you have ANY IDEA how much time the man has spent researching BFS and responding to requests both directly on this BB and privately?

The man's right. Bottom-line, this BB is not run by Doctors (thank god!!). We are all just a bunch of ham 'n eggers who share a common problem. We congregate here to share experiences and offer support.

I feel terrible for Carole, we all do. However, we don't know the whole story. Didn't she have an EMG within 2 weeks of her initial twitching? Diagnosing ALS isn't easy. Look at type 2 diabetes. You can have slightly elevated blood sugars for years before receiving a diagnosis. Nothing in life is certain.

If you have a complaint about Aaron, keep it to yourself. Otherwise, kindly position your mouse over the "Back" rectangle box at the top left corner of your screen and keep on clickin'.
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Carol

Postby KERRI on June 24th, 2003, 12:24 pm

Guys, this woman is *beep*, and she does not mean to take it out on you, but she has recieved a death wish, she is no longer part of the benign community, and now the fear is real, I cry for her, I can only hope that a cure is on the horizon, we need to all pray not fight, we need to believe that we are okay and we need to pray that Carol can survive for a cure or a possible delay to death, what are we angry about, she is the one who should be angry, I don't think she was trying to attack you Arron, I think she is just so fed up, she has not come back since and probably never will, she hates the world at this moment, I know I would.

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Postby dave YY on June 24th, 2003, 1:28 pm

Dale

I didn't realize only opinions that conform to Aaron's are permissible here. Congratulations on finding your uber-twitcher. If my opinions are so aggravating, have Him ban me. I still think his response was far more concerned about his status than Carolmarie's.

A couple years ago on the Braintalk forum I similarly reassured someone who later turned out to have ALS, and still feel bad about it, as his hopes were bouyed and then crushed.

There are professional opinions out there from sources more competent than Aaron's that differ slightly, but significantly, from what he insists on administering to his "flock." I recognize his contribution but am more impressed by his insistence on forcing out dissenting information.

Yeah there's good info and bad info out there. Most of the time the good stuff sticks and the bad stuff falls by the way. But moderators who openly threaten to censor posts for such reasons... well, y'all decide for yourselves.
Last edited by dave YY on June 24th, 2003, 2:31 pm, edited 1 time in total.
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Postby Arron on June 24th, 2003, 2:27 pm

DaveYY said, "but am more impressed by his insistence on forcing out dissenting information."

Forcing out dissenting information? :lol: Well Einstein, facts are facts, Carol had ALS from the start, not BFS, so the fact of the matter is, STILL no one with BFS has gone-on to develop ALS.

A misdiagnosis is not contingent in that fact. We all assume she had a clean EMG, well, if she had ALS, the EMG would have been dirty if read properly and if it was taken in the area of the problems, IF the disease had ample time to manifest. That's just published medical data. I mean, you can't have twitching in your ankle and go get an EMG in your pinky finger 2 days after it shows-up and expect it to show sharp waves consistent with ALS, and if the test isn't read or taken correctly, then that also would be a major factor in a misdiagnosis. Tests are only as good as the person taking it and the person reading the results.

Also, even neuro's will tell you this, one of the reasons they suggest you get a second EMG at a later date is to further rule-out the possibility of having ALS. Why is this? for several reasons,
A; because tests can be taken in the wrong place at the start, as I said above, and, they can be misread or mis taken.
B; As with anythging, HIV, the Flu, Cancer, ALS, etc. there is an incubation time that needs to take place before anything will show-up on tests. I mean if you get bit by a venomous snake on your finger and you were having a blood test on your other arm, it obviuously wouldn't show-up on the blood test that you had snake venom in your system, unless you had ample time for it to circulate through your system to get picked-up by the test. ALS is very similar. It needs time, and that is why we say time is on your side with BFS. Several months with no weakness and no atrophy (a direct cause of the weakness), and you can pretty much be assured what you have is benign. The data is there and the facts prove it over and over again, case after case.

Carol's case took a little more time than what 99% of other ALS cases take as far as getting a true diagnosis. And she was misdiagnosed from the start by doctors she even admits "glanced" at her data and medical information at the start. I, nor any of you, know the facts as to how the tests were taken and how they were read. You can only look at ALL of the other cases and data out there and make an assumption from there, and ALL of the data out there pretty much concludes that without the presence of weakness, twitches are benign. "I" didn't make that up! That is medical FACT! I only say what is factual, so get off your high horse DaveYY and quit ridiculing ME for saying something different and saying "I was wrong".

It is pretty much fact that if you stand in front of a 90,000LB semi truck while it is traveling at 75MPH and it hits your body square-on, you are going to die, but I'm sure there are some people out there in the world that have survived a splat scenario like that because of certain other factors involved. You simply have to look at the data and go from there. The data on something like that would be about 99.999% positive that you are going to die if hit by a truck like that, so if someone survives, are you going to say the data is wrong? The data is STILL there SUPPORTING what it has said all along! Just like the ALS / BFS data. It's pretty concrete evidence and when the Mayo clinic and many other studies on this subject says it is fact, I'd believe them! So get real!

I like your line, "she was right, you were wrong"... about what? Maybe YOU have some inside info you'd like to share with everyone? And about deleting your post, Why would I do that? I want people to see how idiotic your attack was. I don't delete posts unless they are detrimental to this site, and so far, I have only deleted ONE guy's post that EVERYONE was getting upset over, so no harm there. So quit saying crap like I "openly say I will delete posts". You must live in fantasy land or you smoked your luch or something dude.

I think what you did was show everyone that the FACTS I say are true, and you show NO support, what so ever, to prove otherwise...

As far as Carol is concerned, I feel terribly sorry for her and her diagnosis, but I also feel terribly sorry for my family member's and friends that have terminal cancer and many other ailments that are every bit as bad and deadly as ALS. Just because some of you are freaked-out about having ALS, doesn't make the disease any worse than any other terminal illness that a LOT of people that are close to us get in life. None of it is good. I just don;t see why "I" was attacked. Carol should be *beep* at her doctors, not me!

If YOU had a relative that had a cough and was otherwise in good health, and they had a blood test which showed everything was OK at the time, and a good general check-up, wouldn't YOU give support and say it was probably allergies or a cold because LOGIC and FACTS points in that direction? Well, what if it turned-out to be lung cancer after all? Would that make YOU "wrong" or a bad person for showing support and saying it was just a cough because the data and information you had at the time supported it? Well, this happens on a daily basis with MANY families around the world, so does that make the data or facts incorrect? No. It simply meant that either the tests were done too soon to really tell, or that the tests were not taken properly or they were mis read. I never said, anywhere, that you can't take an EMG too early! Obviously SOME time has to pass before it will show up, but it certainly isn't 9 or 10 or months (or more) on any normal basis. The facts prove this.


ALL doctors go with the facts, such as Carols doctors giving her a diagnosis of BFS at first. If she had a clean EMG at the early onset, and had no weakness, then the facts point to BFS, even though she had ALS from the start. But again, it depends on the doctor doing the tests and observations! That doesn't change the fact that BFS does not and can not turn into ALS OR the fact that a clean EMG and the presence of no weakness pretty much rules-out ALS. In 99.% of the cases in the world, this is so, so why think otherwise? Carol's case is no different. It just took a little more time for it to show-up. It wasn't like it was years or anything... it was a couple of months, and several "glancing at data" and non-ALS specialists later when she was diagnosed, so what would you expect?

No neuro in their right mind would give a person with twitches AND atrophy and weakness a BFS diagnosis, period! So why am "I" being labeled wrong? Are you saying that ALL of the existing data out there is wrong and you are right? Yeah, that's a good one! Go attack Carol's first doctors for misdiagnoising her.

You certainly can't get diagnosed by seeing a GP or a Chiropractor when you have ALS, and even in the early stages WITH tests, ALS can be hard to diagnose too, unless there are obvious signs to say otherwise and ample time for it to manifest.

I sure as hell didn't "mis diagnose" her, 'cause I am not a doctor, nor did I ever hear about her atrophy or weakness, so how can you say "I" was wrong? Go tell her doctors they were wrong, or better yet, tell someone who really gives a rats ass what you say DaveYY, cause I certainly don't :twisted:
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Postby dave YY on June 24th, 2003, 4:00 pm

Guess I brought some of the old Braintalk weather over with me.

My primary point is, saying anything to the effect of 'BFS never turns into ALS unless it was ALS all along' is a pointless gesture. We have BFS if that's our dx. It's practically revisionist to sustain the determination that BFS never turns into ALS by changing someone's diagnosis retroactively when the worst comes to fruition. It's too convenient. She allegedly had a clean EMG and clinical exams (not all of which sounded cursory or irresponisble as suggested) and received a BFS dx, then turned out to have ALS. It most probably is true that BFS doesn't turn into ALS. But there are neuros out there who won't say that categorically. So why is it the only permissible opinion here? She was right that your reassurances proved incorrect, and in that way you were wrong.

Reassuring people with twitching is a good thing, don't get me wrong, because the odds are very good that it's nothing nasty from the start and like myself, people with BFS need reassurance. My objection is over the absence of caution you exhibit.

"...and with ALL of the data showing that without the presence of weakness, twitches are benign. "I" didn't make that up! That is medical FACT!"

Aaron... If those are your medical facts, I rest my case. This is why I object to your threat to control the content here, mostly because MANY neuros would disagree with you on that point. And I don't have to scroll far to illustrate this: Carolmarie had twitches that were NOT benign, and she apparently did NOT have weakness for much of the time that she twitched before her ALS dx.

And last time I read it, the Mayo study does not boast of any "facts." The strongest language it uses is that a person with twitching who passes an EMG and clinical can be "strongly reassured" (to the best of my recollection), which is not a statement of fact regarding BFS and ALS and/or the diagnosis between the two. It falls a little short of that, and into that gap, sadly, it would seem Carolmarie fell.

Do I have inside info? Perhaps. But I don't think it's warranted. A couple slightly different professional opinions among many already out there.

BTW, I'm not ridiculing you, I'm criticizing you. I doubt anyone is appreciating any of this so I'm going to quit right here.
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Postby dave YY on June 24th, 2003, 4:12 pm

Ya know, this isn't my forum and I don't have much time for this. My best wishes to Carol and hopes for another misdiagnosis away from where its' sitting now...
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Postby reneeintx on June 24th, 2003, 6:33 pm

Yeah, Dave YY..

Run, not walk back to your brain talk cronies and take the bad weather with you. :twisted:

I'm proud to be a part of this "flock".

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Postby Jenn311 on June 24th, 2003, 6:58 pm

Wow I am staying outta this one! There are no winners.
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Postby Arron on June 24th, 2003, 7:06 pm

DaveYY, the main reason the medical community (which I have many close friends in as well) does not post things by using the word "fact", is because of the many frivilous malpractice law suits that get filed every day. They have to cover their butts and say things like that, but studies with hard evidence that all show the same conclusion, such as the Mayo study and many other's, (no matter how they say it), shows about as hard of evidence that the outcome is as factual as it can be. Whether they call it fact or not.

So, call it what you want, ("fact", "strongly suggests", "points in the direction of", or whatever, 'cause I don't really care...) the end result is that no one has developed ALS FROM BFS period.


So why did Carol have a clean EMG? As I said before, ALS, as with most diseases, needs an incubation time, or an allowable time to manifest before it might show up, and that is the very reason doctors want a second EMG after a "reasonable" amount of time passes to see if anything has manifested since the last test. Be it atrophy, weakness or a dirty EMG.

As I said before, there is a "reasonable" amount of time in which this should be done. You can't expect to get a positive test result two days (figurably speaking) after your twitches start or to see atrophy after a week of twitching, and that is the very reason we always say, "with BFS, time is on your side".

It is pretty conclusive that if you have been twitching for several months and show no signs of weakness or atrophy, you probably don't have ALS. A clean EMG supports this even more and a second one several months down the road is about as hard of evidence as you can get.

Some of these people on this forum have been twitching for well over a year and beyond, and have no reason to be scared at all, but when someone gets misdiagnosed and the frenzy of "what if that happens to me" starts an unjustifiable panic within a whole forum, in a scenario that only happens to .00021% of the population, is about as outlandish as saying you are afraid of an airplane falling on your head or a meteor hitting you, (which has happened at least twice on record so far), so because two people on this planet out of how many billions and billions got hit by a chunk of space debris, that warrants everyone to be afraid of being hit by one themselves? I would go as far as saying it is a fact that you won't be hit by a meteor, and if you do.. so sue me.. I have insurance... you can'r get any better odds than that.

Yes, the waiting game of passing a "reasonable" amount of time sucks, but if someone with ALS has been twitching for several months and THEN gets an EMG, you can bet that it won't come-out clean if it was done properly, the data just points that way, just as the data points in the direction of not having ALS if you have been twitching for say, 1 year and you have no weakness or atrophy (with or without an EMG to back it up).

I think Carol had her EMG too soon, and the obvious results happened. If I gave her peace of mind for a short period, is that a crime? I don't even remember postiong to her, but I'm sure I must have somewhere or I wouldn't be sitting here defending myself. Doctors are wrong everyday, such as Carol's case, obviously. All I did was offer a little re-assurance because the data and information we have all "points in the diredction" of her having BFS UNTIL we learned that she had atrophy. Atrophy is not a sign of BFS. And I can assure you I didn't tell her it was a fact that she didn't have ALS, so why is this all pointed at me anyway?

I do feel sorry for her and maybe she might not actually have it. There have been a few cases where people were thought to have ALS but never actually did. Those are better odds than saying you have clean EMG's and no atrophy, but you have ALS after a reasonable amount of time has passed.

So far, the longest amount of time (on record) before a true diagnosis could be made was 13 months for one poor chap. But that doesn't mean it takes 13 months before you are in the clear. Nor does it mean that because two people got hit by meteors that you are going to get hit by one. That 13 month scenario was one case out of thousands and thousands, and who knows what the actual circumstances actually were. There are lots of areas of margin with this stuff, but if you follow the "strongly suggested guidelines" or facts or whatever you want to call them, the same scenario is still the same.... no atrophy, no weakness and a clean EMG is about as sure as NOT having ALS as you can get, especially after a reasonable amount of time has passed, and if a doctor doesn't want to say it as a factual statement, then all he is doing is covering his butt, just as the neuro on the MedHelp.org site always says...

I can also see why this all started, you're from the Braintalk.org forum... that explains pretty much everything, and it's also why I don't waste my time going over there anymore... maybe you should stay over there with the rest of them and leave this forum to us people that want to stay over here. There's a reason why there are two forums...
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