Discussing ALS Diagnosis Difficulties

[TheTrex]

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.




Kerri

 

[reneecatx]

Kerri~

I'll tell ya, _BoyyDavo_Many'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.

 

[TheTrex]

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.

Kerri

 

[dylan.dibber1]

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.

 

[reneecatx]

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