Christi888
Well-known member
Hi again-hoping everyone is doing fine. 
) Again-Let me express my thanks to this site & all the wonderful, helpful people on here.I feel the "summary" of "BFS in a Nutshell"- should be a 'must read' for ALL BFS people. 
This site is ..."helpful", many, many well informed people & people supportive as well....& in my experience I was NEVER "frightened"...by anyone on this site talking w me...or by what they wrote (on posts...or PMs)-Too bad other sites...& some people on them, do not conduct themselves the same way!If people do not know 'facts'...about bfs..bfcs....they should NOT be talking to others...w faulty & information that frightens another!I am talking specifically about a dear widowed woman, me & my wife met while I was at Mayo Clinic....in Minnesota!She is a very kindly middle aged lady...staying at the same hotel, as me & my wife. She met my wife when my wife was in the hotel restaurant---& was there from Iowa---to be seen by a neuro,,,....for, what sounded to me...(after I met her, too, when my wife invited her for breakfast with us the next day.....day before we left)...like calssic bfcs--!I'll call her "Betty"...(tho this is not her real name)--- And, when she described her symptoms....(& her family..suggested she come to Mayo....after her neuro was kinda not giving her answers...except to say,....her symptoms...after tests..serious...or indicative of a serious neurological condition-! )-she went on .....&-- desribed the past 10 months.....of twitiching....strong muscle contractions..cramping...etc.My wife suggested she talk w me. I reassured her she was most likely experiencing bfcs....(fascsics with cramping.& I assured her she'd get some answers at Mayo- ) She was just starting her examanination...as we were leaving- She did exchange phone numbers w my wife!Anyway--Last nite she called my wife.....---She said she had a good ..thorough 2 day evaluation at Mayo....w tests like mine....emg...blood....etc--& neuro told her---she had bfcs...& not to worry about it! All she said to my wife & me...before we left is..."I'm only 59 years old..& I just want reassurance I do NOT have a deadly disease...or..."would not end up in a wheelchair in 3 years!" 
She told me & my wife the neuro was very nice....& reassured her she was not dying of "that disease"...& she would not be in a wheelchair.....! Then....last nite...calling from Iowa--after telling of her nice experience at Mayo---she talked with a person....from another site she was on....( I TOLD her.....to come onto this site...after what she said!)--With me & my wife both talking.....she suddenly broke down,....into sobs! My wife asked..."Betty.....what's wrong? The Mayo neuro reasassured you---right?" After composing herself..she said...."Yes....HE did...but someone else scared me-! She went on to tell us of this person....who she met...on another site....gave her his phone #---& she talked w him.....last nite. He told her...."Oh....but did the Mayo neuro tell you--that sometimes....bfcs....at times....morphs into --"A..**"-?" My dear About bfs friends---this poor woman.....was terrified! :crying: I immediately reassured her---& she was calmer---I told her to come on...to this site! Told her she would find like minded...well informed people...who would not spout off such..'garbage"-! She was finally calm....& I let her talk with my wife....for the next half hour-! (Her daughter is having a baby....& she is looking forward to becoming a grandmother for the first time)--First--I hope she does. She said she was "staying away" from sites for awhile-! Hopefully...she will come to our site!Betty said..she'd read over this site for awhile---(hopefully--she will read this post....along with some reassuring posts...from other bfcs...ers--)---Anyway--lesson here is......unless I am well informed about anything..(let along a medical condition)---I do not pass...faulty...scary info along!Hopefully...you're reading this Betty....& some of our well informed people will let you know...that this "information" you were given...was false! MY question is. why do people do this? Is it because.....as the saying goes.."misery loves company"?-- 
Whatever---this just made me feel so bad for her--but I'm glad me...& my wife were able to help relieve her of this un called for...fear! Thanks again....--regards--Christian
) Again-Let me express my thanks to this site & all the wonderful, helpful people on here.I feel the "summary" of "BFS in a Nutshell"- should be a 'must read' for ALL BFS people. This site is ..."helpful", many, many well informed people & people supportive as well....& in my experience I was NEVER "frightened"...by anyone on this site talking w me...or by what they wrote (on posts...or PMs)-Too bad other sites...& some people on them, do not conduct themselves the same way!If people do not know 'facts'...about bfs..bfcs....they should NOT be talking to others...w faulty & information that frightens another!I am talking specifically about a dear widowed woman, me & my wife met while I was at Mayo Clinic....in Minnesota!She is a very kindly middle aged lady...staying at the same hotel, as me & my wife. She met my wife when my wife was in the hotel restaurant---& was there from Iowa---to be seen by a neuro,,,....for, what sounded to me...(after I met her, too, when my wife invited her for breakfast with us the next day.....day before we left)...like calssic bfcs--!I'll call her "Betty"...(tho this is not her real name)--- And, when she described her symptoms....(& her family..suggested she come to Mayo....after her neuro was kinda not giving her answers...except to say,....her symptoms...after tests..serious...or indicative of a serious neurological condition-! )-she went on .....&-- desribed the past 10 months.....of twitiching....strong muscle contractions..cramping...etc.My wife suggested she talk w me. I reassured her she was most likely experiencing bfcs....(fascsics with cramping.& I assured her she'd get some answers at Mayo- ) She was just starting her examanination...as we were leaving- She did exchange phone numbers w my wife!Anyway--Last nite she called my wife.....---She said she had a good ..thorough 2 day evaluation at Mayo....w tests like mine....emg...blood....etc--& neuro told her---she had bfcs...& not to worry about it! All she said to my wife & me...before we left is..."I'm only 59 years old..& I just want reassurance I do NOT have a deadly disease...or..."would not end up in a wheelchair in 3 years!" She told me & my wife the neuro was very nice....& reassured her she was not dying of "that disease"...& she would not be in a wheelchair.....! Then....last nite...calling from Iowa--after telling of her nice experience at Mayo---she talked with a person....from another site she was on....( I TOLD her.....to come onto this site...after what she said!)--With me & my wife both talking.....she suddenly broke down,....into sobs! My wife asked..."Betty.....what's wrong? The Mayo neuro reasassured you---right?" After composing herself..she said...."Yes....HE did...but someone else scared me-! She went on to tell us of this person....who she met...on another site....gave her his phone #---& she talked w him.....last nite. He told her...."Oh....but did the Mayo neuro tell you--that sometimes....bfcs....at times....morphs into --"A..**"-?" My dear About bfs friends---this poor woman.....was terrified! :crying: I immediately reassured her---& she was calmer---I told her to come on...to this site! Told her she would find like minded...well informed people...who would not spout off such..'garbage"-! She was finally calm....& I let her talk with my wife....for the next half hour-! (Her daughter is having a baby....& she is looking forward to becoming a grandmother for the first time)--First--I hope she does. She said she was "staying away" from sites for awhile-! Hopefully...she will come to our site!Betty said..she'd read over this site for awhile---(hopefully--she will read this post....along with some reassuring posts...from other bfcs...ers--)---Anyway--lesson here is......unless I am well informed about anything..(let along a medical condition)---I do not pass...faulty...scary info along!Hopefully...you're reading this Betty....& some of our well informed people will let you know...that this "information" you were given...was false! MY question is. why do people do this? Is it because.....as the saying goes.."misery loves company"?-- Whatever---this just made me feel so bad for her--but I'm glad me...& my wife were able to help relieve her of this un called for...fear! Thanks again....--regards--Christian
-Mario