4 Months of BFS: Mental Recovery

[sailinglady]

How long before you really stopped thinking you had something more serious than BFS ?I was certainly dying between 2-4 weeks. Unable evn to think rationally about seeing a Neuro.This Sunday will be 4 months.I am still well.. physically.Mentally, it depends. On average I would say I'm about 80% of the way there. Its been a very steep learning curve. I know a hell of a lot more neurology than I used to.I think maybe we learn to think early on in this "illness" that each twitch means doom. This takes a bit of unlearning despite knowing in our heads that we are OK.So - forgive my usual wordiness !How long before you felt able to "move on" from the fear, and resume "normal life" ?

 

[garymills]

I started feeling better about it about 6-8 months in, and by the end of the first year, I was pretty sure....took probably about 1 1/2 years before my life got back to being basically normal. That is when the muscle/joint pains/fatigue started fading, and I was already past the als worries.Hang in there, things will get better for you. And please, don't waste as much time as I did worrying about als.Take care,gary

 

[TompeteA]

My initial symptom was a tremor in my arm and hand, when I first went to my GP he actually said some of the more serious causes are Parkinsons, MS, and Als, if you can believe that. I had no idea what ALS was and thought nothing of it.The twitching started 7 months later, it was three months after that as I was waiting for my first neuro appointment that I started doing research, and that is when " I'm dead" struck. So it took me about a year before I started planning my funeral. As far as moving on with a normal life, not yet, my symptoms are worse today, much worst, and than ever, and have slowly progressed over 2-1/2 years. My right leg is so bad,no running, biking or sports at all, no one knows what is causing it, but I have been assured it is not ALS, 4 times. My left hand is very week, but I have been assured it is carpal tunnel syndrome, even though I have no of the traditional symptoms. Until the symptoms at least lighten up, no normal life. I still cannot quite completely shake that something serious is going on, but as every month passes, and I dont start falling down stairs, I accept a little more, that this just the way it is, and it is not going to take me out.

 

[Tr3ndM4gik]

Hello I have been twitching all over since fall 2003. I went promply into the "I'm a deader" phase. I saw a top neuro who has seen 100's of ALS patients (Dr. H. 43RichyThe43rd Tyler - the first head of Neuro at the Brigham and Women's in Boston - so he is older and very experienced) and had an emg. I have scatter-shot twitching, hot spots that come and go and pain and cramping that waxes and wanes. None of it ever completely goes away. Oh yeah, I am at the prime age that people get diagnosed with ALS. That really sent me into health-panic orbit in the beginning.5 years in and I am no weaker (maybe more sore) than I was in the beginning. Balance and reflexes are fine. I see Dr. Tyler every year to a year and a half - but never have had another emg. He offers to try some meds to cotrol the discomfort, but I am not in bad shape and would rather not. I am trying to wean myself and will certainly make another appointment and request another emg if any part of my body stops working or seems really weak.So, I figure BFS is a part of my life for the duration - or I have the slowest possible onset and progression of ALS possible. I am convinced that I don't have ALS, though the doubt creeps in, occaisionally. After all, I'm here, aren't I. Except with other BFSers I never talk about it and rarely mention it - even to those close to me. I mostly get blank stares in return. If this is the worse thing that happens to me I will consider myself blessed. I must admit, it took a 3 years to really get to this point of (somewhat) acceptance.Good luck - I really understand what you are going through and thought you might like the story of a long-termer.Colleen - fredoniagirl