about carols post

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about carols post

Postby Brian_B on June 22nd, 2003, 11:00 pm

just wanted to add, Carol is not first person for BFS to lead to ALS, as its been proven that does not happen

she had ALS from the start, maybe the exam and EMG was done too soon to where it didnt show up for sure, thats why I had an EMG and exam 6 months or more from whenI started twitching. That way its long enough for anything to show up if it is there.

or maybe her neurologists just didnt do a detailed enough exam and tests to find out for sure what it was.

and Carol if you read this, and I know it wouldnt change anything, but you might have a valid malpractice lawsuit if the doctors should have been able to pick up there was something wrong, but didnt take the time to actually do it.
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Postby Arron on June 23rd, 2003, 3:03 pm

I have to add to this that I totally agree, BFS does NOT lead to ALS period. They are not even related! Carol unfortunately, was misdiagnosed, that's all. She had ALS and aparent signs of ALS from the start!

How many of you have had friends or family misdiagnosed with cancer? I certainly know of numerous people that were told their problems were just benign and no tests were done ti rule anything out and guess what, once they actually had the tests done, they indeed had cancer.

ALS can be exactly like this and that is why there are tests to rule-out other things. Being that there is no test for BFS, you have to test for other things to rule them out first, THEN a definate BFS diagnosis can be made.

On the other hand, who's to say the EMG she had wasn't borderlined and needed a second test to confirm the results, OR maybe it was simply mis-read from the start? I don't know, but I DO know that almost ALL of you know of someone that came down with something nasty (cancer, etc.) because tests were botched or the doctor they saw was too concerned about getting out to the golf course to really look at his patient.

All I am saying is this, She had ALS from the get-go. She had signs of ALS such as difficulty swallowing (not perceived difficulty, REAL difficulty!) , she had atrophy.. hello?? Neither of those goes along with BFS! Those are warning signs!

Now, those of you with anxiety induced swallowing problems, PLEASE don't freak-out over what I just said, OK? If you are scared, go get an EMG done to rule it out. If you are a long time BFS'er, then you'll know not to be scared because time is on your side for sure.

I can go on and on about this, but I won't. Just remember, NOT ONE single person has developed ALS BECAUSE of BFS! If Carol had developed cancer, would you think that BFS causes cancer too? Keep things in reality and facts as facts... you'll begin to be much calmer and less scared about what "might" happen...
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Postby Nole on June 24th, 2003, 11:18 am

I agree, unfortunetly she was misdiagnosed which, as we all know, can and does happen a lot. Carol has ALS from the start but was misdiagnosed...if you look back at he posts she had many symptoms many of us do not have atrophy, swallowing diffuculties, weakness, and all of her symptoms progressed within these 9 months rapidly. It is sad, but you must not get yourselves worked up...I always thought someone onthis site would have some MND because of a misdiagnosis...time is on your side, no weakness, no atrophy, no rapid increase of symptoms = no als. I am one year into this bfs, feel fine, living life, no worries!!
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