Page 1 of 1

Catch up :)

PostPosted: July 4th, 2003, 1:47 pm
by SusanSid
Hello,
Excuse me for not following throught with this website! I went back to school in January and I cannot tell you how busy I was with homework. I am just now catching up on a lot of things...this website being one I need to get back involved in.
For those who don't recall my history, I've had BFS since Dec. 2001. I started out of nowhere, however I've had them after exercise for years but never gave it much thought. I suddently starting having twitches all over, expecially the arches of my feet,where you could actually see the big toes moving. I've had times where my hands and forearms are bad where it last for a few months.
I had a workup done with my back doctor, thinking it was due to my disc degeneration and bone spurs. They did an MRI of my neck and back and yes, I have bone spurs, yes I have some degeneration, but from what they see I don't have anything pressing on the spinal cord itself. My doctor, absolutely feels it is BFS, see's patients with it and end of story.
School was a blessing because if forced me to get my mind on something else. I took anatomy and it even made me realize more that the nervous system is so complex and there is a great deal we don't know about it. We are all wired differently.
So, it's been 19 months, I do not have weakness, atrophy, I'm actually fine. I DO have fasciculations, sometimes ALOT sometimes I forget about them. I always do in my feet and calves if I look really hard and when I just sit down from moving about.
I take Klonopin at night and that helps me sleep and I think calm down the fascics at night, but I am thinking of going off (with doctor approval) and see if there is a big difference.
The one thing that I hated with all of this is the intense fear...fear at a deep level that I was going to die of ALS. I honestly don't feel that way any longer and have learned not to freak out about the twitches and just now allow myself to become fear riden again.
I admit, I've seen a therpist, to help me with the anxiety, work on my spritual part of my life and that has helped.
So I'd say I'm doing great, I still twitch, especially when I'm tired, dehyrdated and stressed. Oh, I take Mg. 250mg, Calcium 1,200mg , B12 and B complex and I really think that that helps some too.
Feel free to email me via this website (I get a message) if anyone wants more feedback or support. I'll try and be more active....my son get married in a week, so life is pretty crazy!
Happy 4th of July everyone,
Sue

PostPosted: July 4th, 2003, 7:23 pm
by pennben
Susan,

I have similar sx's with the feet and calves...even the big toe moving from the big twitch across the arch of the foot.....does'nt hurt but I can feel the toe move.....I had 24/7 twitching for 2 years now....

Had a ton of tests...3 EMG's..MRI's of brain neck and back....some spinal stenosis at L4 L5...and mild scoliosis lumbar....but no pinched nerve's so they say....i just had a neuroma removed from my right foot about a month ago...still smarts a little bit....but all in all...no real weakness...maybe some mild muscle loss in right leg but this is due to not walking correctly from the surgery.....

I've been examined the the local ALS expert after my year and a half mark and he said no changes in EMG and no evidence of MND....

and dx'd me with BFS...