Maybe this will make you all feel better

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Maybe this will make you all feel better

Postby KERRI on June 26th, 2003, 6:38 am

I spoke to my neuro friend and a vascular surgeon I am friends with as well. They both said that a disease such as als is so tricky to diagnose, but it does not take years to diagnose, yes it is possible that someone twitched for 10 years and then got als, but it is so so so rare, and these guys that I spoke to twitch every day atleast threes to four times a day, they do not worry about it, and they told me that several people twitch like this, if the doctor sees the fasciculation in the office then it is for real, if they cannot pick up a fasciculation on an exam, then it may not be a true fasciculation that you are experiencing. They said after a year or a year and a half, the majority of ALS cases would be diagnosed, it is not the norm for it to take 10 years, but they said that malpractice is a pain in the but, and they would not recommend a doctor telling anyone that they would never get als not even non-twitchers. Athletes get twitching all the time that does not mean they have a better chance of getting als. There is very little data about anyone who had BFS going on to get ALS.




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Postby reneeintx on June 26th, 2003, 11:07 am

Kerri~

I'll tell ya, Daveyy's post made me very uneasy. The part where he said that we have a "slightly" higher risk of developing ALS.
I don't know to believe it or not. Even if the risk is very small, it still makes my stomache hurt. I'd rather battle cancer 10x's over than ALS.

There's quite a lot of twitchers in the world..does that mean that ALS's clinics should start ramping up for us to be there in 10 years or so???

Renee..I hate to be so negative today it's just a bad day...so we've got the next 10 years to worry about being safe...according to good ole daveyy.
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THE POINT OF MY POST

Postby KERRI on June 26th, 2003, 11:20 am

Doctors can never say never because they just do not know, and as for cancer no you would not, there is no peaceful death with cancer. Atleast with ALS there is an unknown, they are not positive that all people will sucumb to its affects in say 18 months, there are some cases that take decades, and within 10 years als may not even be a threat anymore, why spend 10 years harping on about this, I am only giving a year and a half, and if I am fine at that point I am dropping this subject. The only thing we have to fear is fear itself. We could get als, or cancer or SARS for god sake we could die today, I think the answers lies within each of us, shall we sit around and waite for a definitive answer that doctors will never give, lets face it Dave will probably go back at 10 years and they will say 20, we have to remember we are a business for them and a smart business man takes no chances with his business just as a doctor does not with his or her career.

Prime example if Carol is smart she will take those guys to the cleaners, that is if they even have BFS diagnosed on her chart, they may have said it was possible, not that she actually had it. My doctor refuses to put BFS in the chart he does not believe I have it.

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Last edited by KERRI on June 26th, 2003, 11:25 am, edited 1 time in total.
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Postby tlotoxl on June 26th, 2003, 11:23 am

I don't agree with DaveYY on this one. I know we're both to laypeople and that he actually had two neuro's tell him that people with BFS are at an increased risk of ALS, but I just don't buy it. I believe that there may be some cases of misdiagnosis or early confusion (where a diagnosis goes from BFS to ALS) which might tend to give that impression, but we've never read anywhere of any formal study to support the idea that BFS leads to ALS or is an early indicator of ALS susceptibility.

Needless to say, some people with BFS will develop ALS just as many many people without BFS will also develop ALS, but if BFS is a risk factor, I suspect that it pales in comparison to other environmental risk factors and is statistically irrelevant -- or else we'd have read some sort of implication as to its existance SOMEWHERE before now.
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Postby reneeintx on June 26th, 2003, 1:45 pm

Both of you are right :) I guess I'm hoping I die quickly, like getting hit by meteor remnants or an anvil falling on my head.

Believe me, somedays are really great, I hardly have any twitches. Then somedays it's allover constant. I still go about my daily life but this little creepy guy in my head never completely lets me forget.

I asked my neuro about BFS turning into ALS and he said he's never seen or read such a thing.

The chances of carol ever posting again is probably slim to none. If I were her I wouldn't want to be here because noone else here has it, and that would make me feel uncomfortable...like being on display for everyone to ask me questions.

I hope she doesn't have it though :(

Kerri~ I 'd still take cancer over ALS. At least with cancer there's still hope.. with new drug trials and remission. ALS seems to be finite and since it's rare they are hurting for donations.

I know..I know we'll are terminal..so noone here needs to preach that speech to me.

Renee :)
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Postby KERRI on June 26th, 2003, 3:13 pm

reneeintx wrote:Both of you are right :) I guess I'm hoping I die quickly, like getting hit by meteor remnants or an anvil falling on my head.

Believe me, somedays are really great, I hardly have any twitches. Then somedays it's allover constant. I still go about my daily life but this little creepy guy in my head never completely lets me forget.

I asked my neuro about BFS turning into ALS and he said he's never seen or read such a thing.

The chances of carol ever posting again is probably slim to none. If I were her I wouldn't want to be here because noone else here has it, and that would make me feel uncomfortable...like being on display for everyone to ask me questions.

I hope she doesn't have it though :(

Kerri~ I 'd still take cancer over ALS. At least with cancer there's still hope.. with new drug trials and remission. ALS seems to be finite and since it's rare they are hurting for donations.

I know..I know we'll are terminal..so noone here needs to preach that speech to me.

Renee :)


Renee,

I would not take cancer or ALS if I had a choice, but cancer is no walk in the park, I work in Radiology I have seen my fair share of cancer, my grandma died of breast cancer last april, she had inflammatory it basically eats away the breast it ooses, and smells horrible like rotting flesh, then they take the breast off and the fight begins, chemo after chemo, losing your hair, inability to eat, diarrhea uncontrolable, and vomiting, I would not take that ever, after you fight it like hell ya die!!!!!
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Postby dave YY on June 26th, 2003, 3:17 pm

Wow, talk about killing the messenger. it's truly enlightening to discover I have different views than I thought I did.

I'll try this again, but really, a few of you need to apply your comprehension skills rather than clumsily rewriting what you wish I'd said in order to leverage your agendas.

Those are not MY views, they are what my neuos said. I am not responsible for the medical advice they gave me. I am not suggesting we have to watch out for ten years. I don't think I would even agree with them if I were forced to decide on what to believe. But I am not dismissing what they tell me, I am keeping an open mind. They know more about it than I do. Or you.

Some of you are wilfully ignoring this; what my neuros said and what you wanted to hear them say are so close that the difference is theoretical and borders on the irrelevant. They were being honest. If I had asked them, can BFS turn into pulmonary edema, cancer or toe mold? They would have said Of course not, whatever gave you that silly idea? Dismissing them as simply covering their butts doesn't stand to reason. And besides, it's way harder than that to successfully sue for malpractice anyway--getting a dx wrong is a far cry from negligence.

I'm not going to because I'm lazy, but within a couple minutes I could probably fairly easily deliver to you the odds of you dying of a brain tumor, liver failure, pancreatic cancer, leukemia, etc. And ALL of those are some REAL figures, that make the hair-thin ALS odds (whatever they might be) seem like the decimal point surely must have been misplaced. I wouldn't exactly call any of them 'a more pleasant way to die'. Why don't we give ole' Dave a break and fixate on one of those for a day or two?

I'll be gone soon enough, this place is rather frustrating. And I thought Braintalk was unstable.
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Postby KERRI on June 26th, 2003, 3:56 pm

dave YY wrote:Wow, talk about killing the messenger. it's truly enlightening to discover I have different views than I thought I did.

I'll try this again, but really, a few of you need to apply your comprehension skills rather than clumsily rewriting what you wish I'd said in order to leverage your agendas.

Those are not MY views, they are what my neuos said. I am not responsible for the medical advice they gave me. I am not suggesting we have to watch out for ten years. I don't think I would even agree with them if I were forced to decide on what to believe. But I am not dismissing what they tell me, I am keeping an open mind. They know more about it than I do. Or you.

Some of you are wilfully ignoring this; what my neuros said and what you wanted to hear them say are so close that the difference is theoretical and borders on the irrelevant. They were being honest. If I had asked them, can BFS turn into pulmonary edema, cancer or toe mold? They would have said Of course not, whatever gave you that silly idea? Dismissing them as simply covering their butts doesn't stand to reason. And besides, it's way harder than that to successfully sue for malpractice anyway--getting a dx wrong is a far cry from negligence.

I'm not going to because I'm lazy, but within a couple minutes I could probably fairly easily deliver to you the odds of you dying of a brain tumor, liver failure, pancreatic cancer, leukemia, etc. And ALL of those are some REAL figures, that make the hair-thin ALS odds (whatever they might be) seem like the decimal point surely must have been misplaced. I wouldn't exactly call any of them 'a more pleasant way to die'. Why don't we give ole' Dave a break and fixate on one of those for a day or two?

I'll be gone soon enough, this place is rather frustrating. And I thought Braintalk was unstable.



Dave,

You are not being attacked, for some of us a year is a long time to waite.
The point that I am trying to make, is AND I have heard it from the mouth of a few doctors, they simply do not like to tell you that you are going to be okay when there is a chance that you will not be Dave and Arron you have both been in situations where you gave people advice and tried to reassure them and yet they ended up with devastating results, doctors do not like to be put in this situation any more than you do, and malpractice is crazy you really would not believe what people try to sue over. That is why docs are careful, but Dave I have spoken with a few over your post and Carol's these guys have been neuros for 25 years, and some of the doctors I have spoken to even more. They simply said you are okay, and if you were diagnosed it would be the longest they have seen, or heard of ALS progressing without weakness and atrophy and emg findings, they said you would have a very very slow progressing case.

Everyone lets calm down, Dave even you realize what they said is a little extreme right, and at this point you should enjoy your life, that is way to much time to spend worrying about this garbage.

Your neurologist care for you but they need to be careful, believe me the guy I see upstate is the same way, he will not call it anything yet. The guy I saw in the city who is on the ALS site and MDA said its BFS, flat out he said it, he said I have had it since I was 19 and it has not killed me yet, and it is not going to kill you.

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Postby tlotoxl on June 27th, 2003, 6:12 am

DaveYY - I had no intention of attacking you. As I said in my post, I just disagree with your interpretation of the evidence. Your neuros said one thing, my neuros and everything I've read on the net suggests to me something else. Both of us are laypeople, but we're entitled to form our opinions on the evidence that we find, and my evaluation of the evidence leads me in a different (albeit slightly) direction from you. There's no question of aboutbfs 'dogma', just a question of differing opinions.
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Postby dave YY on June 27th, 2003, 6:41 am

*sigh*

Please explain how you can disagree with my statements that I don't know what to think about what I've been told. What part of that do you disagree with--my insistence that I don't know where the truth lies?

I can only presume that if you'd read my posts a bit more carefully, it would be my neuros whom you are disagreeing with. Nothing at all wrong with that.
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Postby tlotoxl on June 27th, 2003, 8:28 am

yes, i think that's what i said dave -- and that because you gave some credence to those neuros opinions (though less so in your most recent post where you said if the issue you were forced you might not agree ), i disagreed with you there. no need for sighing or anything, it's not that big a deal.

edit: ok, i went back and skimmed through the other threads, and you didn't seem to give the credence to those neuros that i thought you did. in any case, i wasn't trying to be critical of you -- from the beginning i think it was clear that it was the neuros who i was primarily disagreeing with. sorry about the confusion.
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Postby Dale on June 27th, 2003, 8:44 am

DaveYY, I'd like to share a story with you...

A couple of years ago, my wife got a call from an old friend who said she was coming to Ottawa to visit for a few days & wanted to know if it was ok if she stayed at our place. Shortly after she arrived, she started complaining about the city, the drivers, everything. She kept saying she was only going to stay a few days, but ended up staying 2 weeks. I had nothing against her personally & she seemed nice enough BUT, some people just don't know when to leave (sigh...).

Dale

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Canadian Union of Full Time Twitchers
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Postby dave YY on June 27th, 2003, 9:59 am

Dale,

I have always admired Canadian hospitality, I congratulate you on your patience and open mindedness. You are a credit to this group.
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Postby j1 on June 27th, 2003, 10:02 am

I think we need to honor everyone's opinion. Dave YY is only repeating what he is being told for everyone's benefit. As many people have said ...we need to look a the whole picture and not a portion of it. Take everyone's information and make up your opinion. I am sure DaveYY will be the first to say that some time with no other symptoms but twitching is a good sign. Just my .02
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