Seeking Support for BFS Symptoms

[rarebirth20]

Ok I never post here because I have a very hard time typing my thoughts so bear with me.My name is Drew.I am almost 30 years old and have had BFS for about 18-19 years.I think EVERY muscle in my body has twitched at some point through the years.I have never had tests run to rule anything out,but for some reason never felt that anything ominous was going on.Now dont get me wrong,I can understand why people would because very concerned about BFS and have testing done.Sometimes I think I am weird for not worrying about it more.I think being a 10-11 year old kid had something to do with it.You know,feeling like nothing bad will ever happen to you.Anyway,when I read other posts here,I have noticed that many seem to be new to the syndrome.Are there any others here like me?People that have had BFS for like 10+ years?Have your symptoms worsened,improved or stayed the same?

 

[mommyLDN]

Hi Drew and welcome. Thats some impressive time you have under your belt there. So let me ask you,...have your symptoms, gotten worse, improved, or stayed the same?? )

 

[FantasticFurball]

Indeed. Some had this for 30+ years. I myself am in doubt about the timeframe. This feeling under my feets when I was tired and in stressfull shopping-centers with the familiy in my teens... Could be fascics without my knowledge. In that case, I am 20 years out with this. Otherwise I became aware about the possible malignant condition for about 4 years ago and went through he whole mill with neuros doctors etc. (No emg though). My BFS almost exploded and now its all the time. No breaks no relief. But I am in fine shape... So no worries...

 

[Drogulus]

I am 51 years old and I developed it at around age 30. So 21 years.

 

[Drogulus]

Sorry, I didn't answer your question. My symptoms wax and wane. The twitching has not gotten worse. Always there in calves. Comes and goes everywhere else. The sensory symptoms that I get are probably a little worse on the average, and at times get a lot more noticeable. Right now they are relatively quiet.

 

[rarebirth20]

Thanks for your replies.Sometimes I think my symptoms have worsened over the last year or so.For example,I think per day,I have more fascics than I used to.And I have many that are simultaneous.Also,I can't remember getting as many hot spots as I do now.There are 3 spots on my face that are twitchy hot spots right now.Edge of my lower lip (right side),Right upper eyelid and left jaw line.I try like hell to ignore it,but the facial ones drive me NUTS!! One would think that after this many years,I would be used to it,but no such luck.