Newbie with BFS Question

[rarebirth20]

I am new here.Just figured out what I had a few weeks ago,then came upon this site.Its nice to find others that understand what I mean when I say my leg is twitching so hard that its moving my laptop!Anyway,I was thinking about BFS and when it first started for me.I actually remember feeling a muscle twitch for the first time when I was around 10 yrs old.It was a really strong one in my thigh.I told my mom,who seemed to find my claim strange,so I never told anyone else.They were less often then,gradually becoming more common throughout my teenage yearsI just realized a few days ago that I have had BFS for 17 YEARS!I remember in the past,the twitching would drive me crazy and make me feel weird,which in turn made it worse.Anyway,I still have twitching to this day and assume that I will always have it.I was just wondering how long some of you have had this strange,frustrating,and sometimes frightening problem.

 

[twinTwosome]

Just 3 months for me. Still in the "bordering on terrified" stage. I have body-wide twitching with migrating pain and hot-spots. Clean EMG 3 weeks ago.Becky

 

[Outlook1958]

Five months in my change, without any increase or decrease or real new symptoms (except for those from anxiety). I'm not scared to death anymore at the moment, but I still feel kinda uneasy because nobody knows the real reason for that twitching, even if it's completely benign.

 

[edirish73]

10 months, No EMG ( Ouuuccchh Neeedles Nope).I gotta tell you, my body was so boring before BFS, that I see my twitches as my personal massage device. Also the twitches are a great party trick, try it you wont be disappointed.Welcome Aboard,Eduardo

 

[FantasticFurball]

Almost 2 years with a lot of twitching. But... Wait... was that a scalp twitch? Yes, I have had that for many years. 6 at least... Hmm, and under my feet? That feeling ... perhaps since I was teen... 20 years.. ? But I have been on the bad-feeling-i have- als- fear - for about 2 years. Hmm. I guess its time to move on... Somehow...

 

[BarboFour]

I first got this bfs stuff in 2003 and it went strong till 2005. I am now enjoying my second round of twitching and terror for 10 months.

 

[CocoFalco.Dop]

14 years. EMG test done for 7 years ago, showed benign fasciculations. During a few past years I´ve had relief from a medicine.

 

[DirtySouthwestGuy]

Hi,I've just hit the one year mark. Having said that I have twitched for much longer than that, years longer in fact. I was just never worried about it before all of my tingling started.Clean brain MRI scan still does nothing to allay my fears

 

[Tr3ndM4gik]

I am a 57 yr old female who started twitching in 2002. I Googled "twitching" and went straight into ALS horror panic, particularly as I was at the classic onset age. My primary sent me to see Dr. H. 43RichyThe43rd Tyler, who was the first Head of Neuro at Boston's Brigham and Woman's in the Mid-50's. He has seen 1000's of ALS patients and knew right away I had BFS. He ordered an EMG as he was wise enough to know that the results would peel me down off the ceiling. Because I am the typical BFS health-anxious person, I saw him yearly for the 1st 5 years, but have not seen him now for almost 3. S0! I twitch everywhere and have all of the symptoms. I now just consider this a part of who I am. I am active and execise - mostly power walking and hiking. My advise to anyone who is new to this is to be cool and only really worry if a body part WON'T WORK when you ask it to. BFS is not unusual - ALS is. I hope my little story is a comfort to the anxious. God Bless.Colleen in Boston

 

[LaurentHCH]

8 months now, had two clean emg after 3 and 12 weeks. one showed fasciculations but no signs of denervation and/or reinvernation. this crap moves around. have good days which are a great relief - but suddenly without having an explanation the fascics are back again. they have settled down in the foot (left) and both legs (calves and thighs) but happen here and there from time to time. yesterday both of my outer hands twitched below the pinkie. never had it there, and then both hands the same day. this crap is very bizarre, doesn't seem to follow a logical pattern.

 

[LisaQ.]

Four years that I've been keeping track, but before that, I had migrating hot-spots for years and never paid them much mind. I just thought I was drinking too much caffeine. It wasn't until I felt MAJOR perceived weakness and body-wide tremors that I started paying attention to the fascics. Blessings, Sue

 

[UserConcernedGuy]

Colleen in Boston (fredoniagirl).....I have pretty much done the same thing as you when it comes to doing the Google thing....and I am freaking out. Saw my PCP and they referred me to the neurologist that saw me back in Oct 2008 for Bell's Palsy (that resolved itself). The problem is the appointment isn't until June 18th....ughhhhhh. When I am at rest I am noticing all kinds of twitches all over my body...thighs....calves...bicep...tricep....glutes..lower back. I have noticed/felt these twitches for about the last 2 months. When I look back the only thing that has really changed (other than being very stressed) is I stopped eating red meat about 2 months ago. Any thoughts? Steve

 

[MarioMasher]

If you have to ask about it, then you don't have it.

 

[MarioMasher]

I understand. Look, we have all been there. I'm sure there isn't one person on this board who at some point hasn't A) planned their own funeral, and B) debated how they were going to kill themselves after the ALS diagnosis has been made. So I know exactly where you are coming from. My point is that no one has ever turned out to have anything serious, and neither will you. You will just have to learn, in time, to believe that.Best of luck.

 

[BarbiePetals]

I've been twitching for 2 months now. Had a clean EMG and normal neurological exam. Still in the "terrified" stage but am taking it 1 day at a time.

 

[glittermuff]

Going on 9 months now without any sign of let up. In fact, recently they've gotten worse. My twitching is body-wide, head to toe, and they're especially worse at night. I count myself lucky to be free of the associated cramping some of the BFS community seem to suffer. It's now a part of my daily life, a fact I've resigned myself to. Oh, what I'd give for a twich-free day!

 

[MeaganGranger]

I have had the symptoms since September/October 2007. Over the next 8-10 months the twitching spread all over with a lot of buzzing, some tremors, cramping and a flickering sensation. I had an EMG and a clinical in November of 2008 (1 year after onset). Clean EMG (so clean she only did it on my right arm and leg and my back, didn't bother with the rest) and a great clinical, despite some brisk leg reflexes.The symptoms have come and gone since it began, but I am currently in the worst bout of it yet. I saw the neuro about a month ago before she went on a maternity leave and she did a clinical exam and said not to worry... easier said than done right?!