Deleted for Ignorance
- Thread starter SandyAnn
- Start date
Hey Dee-Dee!You go girl!! I read the post in question this morning when I came on and I couldnt believe it!! Dee-Dee, I agree with all you say, no room on this forum for that type of post!Hope you are well and looking forward to your little ones arrival!Best wishesSandra
I probably should stay quiet but have to back up Lovely here. Idle speculation and "asking questions" about extremely rare events on a forum to which people come for information AND reassurance is a definite foul. (Insulting someone's belief in God is another matter altogether.) I have read where someone had stage III colon cancer but no symptoms. I asked my doctor about such things and he said that's why we read about them--they are so rare and they sell magazines, even ones supposedly devoted to health issues. So someone wants to play up a rare occurrence for shock value--great. Just don't do it here. What is to be gained? Likewise, our own Kit--a physician--once admonished the denizens of this forum to take "studies" with a large dose of salt; simply reading them often lacks context and they are, after all, "studies," not gospel.I prefer to listen to my own doctors. Their words and the overwhelming preponderance of feedback I've seen here from others, as a result of their own doctor visits, lead me to the conclusion that twitching as a presenting symptom of NMD is raaaaaaaaaaare and that twitching in the absence of clinical weakness and wasting/atrophy is benign. If accepting that from an experienced neurologist is "weak and blind," then I'm weak and blind. A clean EMG does indeed mean no NMD--got that from my neurologist and countless others here. Moreover, the fact that someone goes on to be diagnosed with ALS after 2 years of twitching--that one in a couple million shot--is purely coincidental. Let's face it--we'd all hear a great deal more about twitching as "the sign" from far more neurologists if what Had wrote is accurate. Too many people have noted that their neuros (mine included) didn't get overwrought about their twitching. So, are we all seeing a bunch of "weak and blind" neurologists who are masterfully hiding the truth? Color me doubtful of that.But folks shouldn't come on here speculating and posing questions that will clearly emphasize the rarest of events and then express surprise that such action generated anxiety. Context, context, context. Again, as Kit used to say, when you hear hoofbeats, think horses, not zebras (or unicorns or Roman chariots or something like that)! If you can't say something nice (and helpful), don't say anything at all.Mark
cindyandco
Well-known member
Thanks Mark.. I just couldnt belive my eyes when I read his post then I recieved a "personal" pm from him telling me I am "Blind" to the truth. I believe he is calling GOD being the one for the weak and blind not our neuro's but in any sense. He is wrong. I just know what this post would have done for me a few weeks ago...even more 5 months ago. I have come ALONG ways.. I had one foot in the grave and one foot on a banana peel so to speak, I didnt think I could go on. I just didnt want this PERSON to do this to others and cause distress. He is NOW moving it to "PM'S" to people..which is UNCALLED FOR.Sorry for the uproar I am pregnant and horomonal but Im sorry this just really got to me in a way that made me SICK TO MY STOMACH TODAY!Lovely
Mark and Dee Dee: I am glad you have brought this thing back to the ground. I am terribly disappointed in anyone reading this forum who would resort to insulting someone's personal beliefs, whether they themselves believe or not. Had: that was totally uncalled for and disrepectful not only to Dee Dee but to many of us on this forum who are believers in God. As far as the info you presented, I cannot say you are wrong or right (it does not seem consistent with what many, many others have been told by their neuros). I do know that there are SO many here who have been through the terror of fearing they had a terminal illness and are coping with that fear (myself included). To reignite that fear serves no good. As for not being realistic----I prefer to maintain hope until I have a concrete reason to do otherwise. That is not the same thing! Cindy
rumzcaneconundrum
Well-known member
This post was deleted due to lack of intelligence.
You know, the bottom line....I am sure there are people out there that has had BFS, and went on to get ALS..It doesnt mean it is connected. I am sure there are people out there that has suffered migraines all their life, and then unfortunately, a number of people have come down with a brain tumor. I am sure a few people have suffered from chronic bowl syndrome, then a few went on to develop colon cancer. I am sure the list can go on and on. IT DOESN'T MEAN IT IS CONNECTED. It is just unfortunate that these individuals developed unfortunate scenarios. We shouldn't put too much worry and thought in the few isolated low percentages of individuals who develop ALS in rare situations..But focus on the majority..Unfortunately there are people who go searching the internet, find something that scares them and they don't want to be scared alone, so they bring it back to this forum. I am not saying this is what happened...I didn't even read the link or the information in question. I choose to think positive, and go from there. Nothing in life is guaranteed. You could be totally healthy one day, and one day find out devestating news, or one day just be driving home from work, a block from your house you are killed. I am not trying to be negative, I just want people to try and live each day to the fullest and not worry about what could happen, because the truth is anything can happen. I am a paramedic by career, also a nurse....I have seen alot of unexpected tragedies in my life, believe me...Your life can change in an instant. Try to live your life joyfully, and not worry about what can happen.There was a story here in the news a couple weeks ago. A Husband was driving his pregnant wife to the hospital to have their baby...The husband stopped a gas station, and he was robbed and stabbed to death...He never made it back to the car. SORRY, it is not intended to be negative.I think if your neuro has given you the OK, run with it....don't be pulled down by information brought to this support forum, which is negative..The information does not pertain to you.It is time for me to leave the forum, for I have been on here for 2 years and 3 months. I hope I have helped people along the way. I know this forum has helped me, more than hurt me with a few negative posts. But this forum is great, and really has the potential to become even better. I am sure there is alot more people out there suffering with BFS, and has not yet found this website. Hopefully, this forum will be around for them. Good luck to everyone...Live for today. I know you all will go on to live full and joyful lives..Lovely good luck with your lovely arrival.P.s. I have in the past, utilized Garym, the moderator for advice on posts before I post them. If there is any question on a post whether someone could be frightened or bring a negative attitude to the forum. Garym was gracious enought to evaluate the information before posting..He has a lot of experience, and he is very confident in BFS to be able to read informatin and give advice. I suggest that to anyone, who wants to post information that could possibly upset the support forum and those that are trying to find support.Good bye, and Good luck again. Maybe I will come back at the 3 year mark and post an update. I will check my PMs for the next couple days, if I can help anyone.Terri
Okay boys and girls, men and women...This isn't the place to scare each other or to have a fight.The forum is for people with questions about it, to tell their story...Now, 1.Nobody can give us a full 100% garanti in life. Maybe there are cases known were BFS turns into ALS, but studies prove that this is not the regular way.Specialists say it is coincidence. 2. As far as I know, nobody here as gone from BFS into ALS, so reassuring again.3.I've been to a top neurologist in Belgium- EUROPE 
) , this neurologist is considered to be a world authority about ALS. his words: I say you are ok, but if you keep on searching the internet you will always find ammunition to shoot us. But keep in mind, everybody has access to internet. So a lot of stories are not true and if they were the person who wrote it is often into panic, wants to be heard and never gives the perfect story. Often they haven't noticed symptoms that are clear for doctors and neurologists.4.A cough is just a cough but it can also be related to lung cancer, so we we check it and if it is ok than it is. But we can't say this person will never develop lung cancer - but - it is not related to his previous coughing. (i hope i explained it well)5.My neuro also said; we are studying this disease and you think you now more about it? answer: nope6. Don't put the extreme rare cases on this forum because it is not us! There will always be rare cases of everything - there are people born with 4 arms, but ...yes say it all together this is "VERY VERY VER VERY VERY RARE"7. If you doubt your diagnose go for a second opinion or go back, only a real doc/neuro can give you the correct answer, we can ONLY GIVE SUPPORT Tip of the day: everyone stay off those ALS websites, don't google twitches -- just google bfsforum.com. So now, be nice to each other ) Note: to all people that are trying to upset people here: get lost or I will hunt you down (always wanted to say that in English 
) And I can hunt you down because I don't have any weakness LOL 
BartFor all those with good intentions: LOVE YOU !
) , this neurologist is considered to be a world authority about ALS. his words: I say you are ok, but if you keep on searching the internet you will always find ammunition to shoot us. But keep in mind, everybody has access to internet. So a lot of stories are not true and if they were the person who wrote it is often into panic, wants to be heard and never gives the perfect story. Often they haven't noticed symptoms that are clear for doctors and neurologists.4.A cough is just a cough but it can also be related to lung cancer, so we we check it and if it is ok than it is. But we can't say this person will never develop lung cancer - but - it is not related to his previous coughing. (i hope i explained it well)5.My neuro also said; we are studying this disease and you think you now more about it? answer: nope6. Don't put the extreme rare cases on this forum because it is not us! There will always be rare cases of everything - there are people born with 4 arms, but ...yes say it all together this is "VERY VERY VER VERY VERY RARE"7. If you doubt your diagnose go for a second opinion or go back, only a real doc/neuro can give you the correct answer, we can ONLY GIVE SUPPORT Tip of the day: everyone stay off those ALS websites, don't google twitches -- just google bfsforum.com. So now, be nice to each other ) Note: to all people that are trying to upset people here: get lost or I will hunt you down (always wanted to say that in English ) And I can hunt you down because I don't have any weakness LOL BartFor all those with good intentions: LOVE YOU !@ Terri, Same boat- As a hospice nurse I know our lives can end at any moment. We may find out we dont have ALS today but we may have cancer tomorrow (not trying to be negative, but a point)..or a wreck on our way home. Nothing in life is 100%. Good post. I did not POST HAD'S PM to get a uproar started...but I wanted people to SEE what he has been doing- THIS ISNT THE FIRST. GOD , JESUS, The FATHER SON THE HOLY SPIRIT IS MY BUSINESS....I am not ATTACKING his athiest ways. I am attacking his unthoughtfulness and relentless pattern.Ive been praying for a sign to leave this post and put this past behind me....Its HARD when I want to HELP others to stay off this forum because who knows where I 'd be w/out the HELP of all you Guys and Girls excluding a few. Truly you all have been a Godsend. I've backed my bags numerous times only to come back- but I think I have to agree this is enough. I dont need to start over when my baby is about to be born and go through ANOTHER "WHAT IF" neurological MERRY GO.I know what my highly qualified neuro saw, tests she ran etc... I trust her.HAD, You have the WRONG country if you think anyone here can JUST be a DOCTOR. Your confused. Not in America Buddy.@Bart, GREAT POST! GREAT POSITIVITY and TRUTH! You keep it up! Again...I have to follow Terri on this one. I thought I could come back and help. I've faught rounds w/ my hubby for him to let me have my computer back and be able to use this site for help and support but I dont think I need it anymore. Not when I am going to get e mails attacking my religion, my neurologist etc. Thats just out of line. I've come a looooooooong ways with my anxiety and this BFS mess. I praise GOD that is ALL it is! Thats all it will be until proven other wise. Blessings to all...Lovely