Ok, i never go to the **S forum websites. But, after reading what you all were saying here, I went to see for myself. Now I see why many people have more anxiety after reading the posts there. Sheesh some of those folks make it sound like they had minimal symptoms and then bam...got an **S diagnosis. I don't understand these people that had symptoms for years and years and then it was determined to be **S. I thought it was progressive and moved fast? Either some aren't being totally honest about the onset of their symptoms over there or what we have been told by our doctors isn't entirely true. I have to believe our doctors are correct and that we all have BFS, but that website does raise some questions. I am typically pretty calm about the BFS symptoms and have come to believe for the most part that it is all benign stuff, but I have to confess those posters got me amped up. I'll not go back there. Anyone want to talk me down please?Linda
Diagnosed with **S After Years of Symptoms
- Thread starter DonJose
- Start date
cindyandco
Well-known member
Hey Linda: I just posted under questions. I too took a stroll over there and have been on edge up until the past two days. We must remember-----that is them, not us. NOT US! I think the charts are unreliable and inaccurate. I believe what the experts here have told us. I have read enough posts about comments from the neuros and read posts by Aaron and I feel that these are much more reliable than that particular site. You are okay! You are okay! You are okay!!!!So am I. Take the advice I've given myself and do not go wandering that way again. Keep your mind focused on the positive---don't dabble in the negative. You know in your heart what the truth is for you. Go back to that and trust it. I hope you will be feeling better tomorrow. I'll say a prayer for all of us.BlessingsCindy
SharonSmoove
Well-known member
AAAAAAHHHHHHHHHHHHHHHHHi said the next time someone admits to venturing onto an als site i would scream 
STOP TORTURING YOUSELF. PLEASE...read anything, but stay away from forums that are adding to anxiety.shon
STOP TORTURING YOUSELF. PLEASE...read anything, but stay away from forums that are adding to anxiety.shonNow...There 3 obvious things.1) A Neuro has not reason to tell stories...Actually, if anything, it could make profit in telling stories such fasciculations may "ttransform themselves" in something worse, thus increasing doubts in return of more follow-up appointments (read cash).2) Since I've started to ask around, everybody seems to be twitching (who more, who less). And, my friend, eye twitches are still twitches...You may therefore argue that twitches per se mean nothing. So, whatever you're gonna get in the future, you may well tell that you had twitches a few years/months before. This does not mean that they were linked to it....3) Without weakness in the first place, there is nothing much to talk about.
Hi edado, yes of course you are right. It is like saying, 7 years ago I had a headache and now I have a brain tumor...so everyone with a headache is going to end up with a brain tumor. I do get that the logic isn't there, but I still don't see how so many of these folks claim to have symptoms and then no diagnosis for many years. WTH is that about?Linda
If anyone is ever god forbid given the news that they have a terminal illness...the mind must go into overdrive. You will relate was it because i smoked, is it because i was fat , did i drink too much, not enough exercise etc... then your mind will think well when did i get this...was it when i had that cough last year...i remember 5 years ago i had a some chest pain etc...Same with MND I remember once tripping over the mat 5 years ago...i remember my thumb twitching when i was writing a letter 6 years ago ...i recall almost choking on a bit of bacon when i was 15....You know what i'm saying. Your mind can recall such events when it looks deep enough. Anyway Linda just go with your own body YOU are not that unfortunate person over there. Trust your neuro trust your own body and keep your mind away from information that has no bearing on you.ATBGuy
Everyone I know closely has had some BFS symptoms at some point in time. If they were to develop something serious in the future, they could say, yes, I've been experienced such and such symptoms on and off for years. The point is, if it isn't OBVIOUS weakness that's progressing then it doesn't count in my book. Best Wishes. Denise p.s. I've read some of those also, and, like I said, most people I know can say they've twitched, or thought they were having trouble slurring words, etc. Don't think any of them have anything sinister and they're certainly not worried.