Page 1 of 1

4+ year anniversary check in

PostPosted: April 9th, 2017, 3:30 pm
by cecsix
hey all, I haven't been on here in a long time, but I wanted to stop by and give a quick update. 4 years ago at this time, I thought I was dying. You can go find my other posts, but I don't think I've done an update since my one year "twitchiversary". Quick history, started with persistent foot fasci's in early 2013, spread to entire body, confirmed with two EMG's and other abnormalities in blood work and a muscle biopsy. All of my MRI's and such were inconclusive for any diagnosis, but not of them were completely normal either. So, for about 6-12 months, I worried incessantly like many of you have and may still be.

Well, my update is that I still twitch, although I either don't notice it as much, or it doesn't happen as much. The first couple of years, I was ALWAYS feeling a twitch here or there, most commonly in my feet and calf muscles. But I've also had them in my back, face, tongue, and every other scary place you can name.

I finally made the decision sometime in 2014 or 2015 that I wasn't dying. I had been in very good shape before all this started, but I kind of gave up because I thought it was pointless to worry about being physically fit if it wasn't going to slow down the inevitable. I started drinking too much and eating terribly, and put on about 30-40lbs.

I'm happy to report that I've lost almost all of it, started running again, which was a love of mine that I thought I'd lost forever. I recently completed a half marathon, which was the first time I ran anywhere near that distance since well before this all started. So, at least 5 years or so. Other than the twitching and occasional cramp, I feel great and am looking forward to continuing my health and fitness journey for decades to come.

If you're scared, read all of the posts here from others who are dealing with this. The people who post here kept me sane for many months while I was scared. Chances are, you're fine. Don't let too much precious time slip away worrying, it won't help. Get with your doctors, get any answers they can offer, and don't second guess them if they tell you it's not the worst case scenario. Celebrate it and get on with your life.