AndyStreams
Well-known member
...and I'm still here! I haven't been to these boards in a while, but I thought I would just check in and say hi. I was here quite a bit when my twitching started in the Fall of 06. Just to let folks that are still freaked out about als know; I was twitching for a year and just getting used to it, when a big ridge in my thenar muscle on my thumb/palm appeared. And when I walked, my foot started scraping and catching the floor far more often than normal. And when I saw two neuros, one of which was an als specialist, they found mild clinical weakness in my right hip (that I didn't even know was there!) and some slight weakness in my right hand (where the atrophy is)Add those things up and it would seem like I was a goner, but none of my doctors think so and 97% of my brain doesn't think so either. I've been twitching for 17 months now and I can still button my shirt and walk to work every day. The atrophy showed up 5 months ago, and it has not progressed. And like I said; my foot scrapes, but I still walk to and from work every day with no real problems other than the annoying scraping, which will usually happen anywhere from 1-4 times per walk. And the weakness they found was minimal (4+/5 I think they called it.) I have had two clean EMGs and tons of blood work. Now, they did find some things in the blood work that could possibly suggest some autoimmune thing going on, but no one can really pin it down. I should mention I have had many other symptoms that are not consistent with als, such as eye problems (visual snow, floaters); random sore spots, tingling, migraines, etc. Whatever it is, it sucks but it doesn't suck as bad as a lot of things (that's a Shakespeare quote I think. Or Beavis and Butthead, I get them confused) One thing that I've learned in the past year and a half between these forums and doctors visits is that a lot of things cause twitching, and there is not one simple answer that will answer all of our concerns. There is no formula that says A+B = BFS or MS or Lupus or any of those other fun things. Some people it's anxiety and too much coffee, someone else may have an ambiguous but non intrusive autoimmune issue (other than twitching), someone else may have vitamin deficiency. But people seem to gravitate to ALS because it is the scariest, worst case scenario to imagine. It was actually the als specialist that suspected Lupus, and coming from her that seemed like a huge relief! That being said, twitching is never a symptom I've seen regularly associated with lupus, it was all my other weird stuff going on that got her to suspect it. I came to the conclusion that I can't expect doctors to know what this is, but I can try to trust them when they tell me what it is not. I may have those freaky alsish symptoms, but als is not a subtle disease; and chances are that if it was als, I would know it by now. Anyways, I thought I would say hello and check in. Folks on here helped me from everything from medical anxiety to my breakup with my girlfriend haha. Good folks, that's for sure. I am now goin to school for my masters, got a new job, a new apartment, I've got an album coming out over the summer and I'm going on roadtrips every opportunity I get. That's the stuff I learned from Basso (in the interest of not being crude, I neglected to mention "boinking" in that list haha). So yeah, that's all. Just sayin hi and lettin newbies know that you can have a whole bunch of really freaky symptoms beyond the already nerve racking twitches and still be okay. Cheers,Andy
sharon