not alone, not weird

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Do you want to be happy?

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not alone, not weird

Postby onebluehaze on July 19th, 2003, 11:26 am

I found this site two days ago. It seems im not alone in the way that i couldnt understand at first how something could be benign yet causeing me so much agrivation and worry. As time goes on, and you try more and more meds to try and help them "go away", you start to think that as long as they are benign and they dont hurt, and they're simply a bother, why take meds for it?

I was on Tegritol (200mg 3x a day). It helped A LOT. Made the fasciulations just about dissapear, along with my mental capsity and sanity. Turns out I'm about as bright at a 25w lightbulb when on the med :shock: , and would rather twich and cramp than become a "chemical retard". So I guess to each there own!

I have had more then just the fasciculations to worry me, in the begining, doctors thought that i had MS, and that was one year before the fasciculations started. I woke up Christmas morning and could not feel my Right arm, it had gone completely asleep. I thought at first, "okay, it will wake up soon and then i will roll over and go back to sleep". It didn't wake up for another 3 days. Christmas morning i was also blessed with my current partner dumping me, to spend Christmas all alone, single, and numb.

6 days go by, i have gained feeling again in my right arm and now my leg is acting up. My legs become VERY hypersensitve and walking starts to become a chalenge. 3 weeks later to even move my legs up the stairs i have to pick them up and set them down, the movment of my knees to walk up the stairs hurt so much that i would have no other way to get up them. 3 weeks later, im back to normal.

I went to the Doctor in town and said, WTF?!! She sends me to have an MRI of my brain w/wo contrast. It comes back normal. In the year to follow (more like year and a half or so) i would have marked hypersenitivity along neurve root paths for 2 days to a week at a time every month with weekness in my knees and pain in the arches of my feet.

"Then, last spring 2002, "twiching" starts, in my right arm. Thought nothing of it untill one day they were so strong, and lasted over 8 hours non-stop. I thought i should see my Doctor. He sent me to have another MRI ( i would end up have over 7 MRI's). later he sent me to have a EEG, nothing. Then i had a sleep study, nothing. Then i went to UCSF (san fransico) Medical for a neuro visit. Turned out to be the BIGGEST wast of time and $$ i have ever spent. They took 2 minutes with me and said,"you have a migraine of the body, now leave"...

I almost shat my pants in laughter. Yes, this was a condition but i dont think so!! To amuse all the Dr.s i took a heart med that would slow down my heart rate (slowed it down to about 50 bpm). This was their idea of a body migrane fix... didnt help AT ALL, in fact, i fasciculate most when i am relaxed, it made it worse.

To this day, i know that i have BFS per my neuro, and that is fine for me, even though when i wake up in the morning, i cannont feel my pinky and ring fingers and have a bad case of vertigo, off and on hypersensitivity and more brain farts that what i would consider normal. Why and i happy with only have BFS and not worried about MS and so on?? Because my mother got breast canser last year and it was caught with a mamagram and they had to cut both of her breasts off and give her new ones. They put her on chemo for 12 weeks and she barfed every day, and cryed, and wanted to give up... but i was there by her side as she vomited, rubbing her back and teller her she would be okay... there are worse things than BFS, MUCH WORSE.

being worried or upset about twiching is normal, but its not condusive to the stopage of it. choose to be happy, choose to laugh and smile when you down. attitude is all up to you, and it makes a difference, you can have cancer and als if you want to die... but if you want to live and be happy, then do so. Its not that hard...

23 y/o male with BFS
"don't worry, be happy... <sings>"
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Postby Kamal04 on July 22nd, 2003, 12:26 am

wow excellent post.
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