My story with BFS

[jburzlaff]

Hi, I just came back to the group to tell a little about my last six months. About six or seven months I started having widespread twitching and just as many here I decided to google and BOOM I dx myself with ALS (back then I feared even spelling the three letters). Well, I soon found the AboutBFS website and started getting to know this condition, but nothing was enough to eases my fears. I had one different kind of twitch or symptom everyday. I had the widespread twitching, big strong visible twitches, strong persistent ones, small almost invisible ones and the even a persistent invisible one on my left foot, I tripped constantly, I felt week as a whole and sometimes just at certain locations. My left foot became really sore and I could barely walk, it was crampy and weak. I tried everything to take my mind off the disease, anti depressants, exercises, and as a last resource alcohol. I started drinking and doing stupid stuff in order to "enjoy life" after all I was convinced I had just a few more months to live. I lost my college semester, I crashed my car, I had fights with my family and ultimately broke up with my girlfriend. Naturally I slowly realized I didn't have ALS but the damage was already done. Now I quit drinking altogether, got back to college and somehow managed to convince my girlfriend to take me back. The thing is, nothing of this should've happened to me and it shouldn't happen to any of you too, if I had only listened to the doctors or anybody for that matter I wouldn't have wasted six months of my life. I hope this can help someone. I'll stay on the gropu for a couple of days and then I'll leave again because reading about symptoms and stuff never helped me and i don't want to risk thinking too much about this again.

[Nytviolet]

Thanks for sharing your story. It's true that when we're preoccupied with ourselves to an almost OCD extent, we make bad spouses, lose contact with friends and find ourselves incapable of caring about anything except WHAT IF? A very good post and cautionary tale.

[LKP1231]

Agreed. My husband is losing patience with me. I'm in process of all testing. Emg two weeks from today

[jburzlaff]

checking in to say I'm fine and you'll be too! 1 year since this post, never been stronger

[jburzlaff]

Hey, everybody, just here to say that am still here, healthier and stronger than ever! Hope these posts help somebody some day! I know how hard HA is and how BFS can be hard to deal with, but you can overcome it and you will be fine! BTW, I still twitch 24/7 on my calves (and I mean 24/7, every second of the day) and still have all kinds of weird things going on, hotspots, flutters, creepers, pins and needles and so on. and the random twitches, all the time. I'll be here again sometime in a year or so just to let you guys know!