KirayEmmayHaleyyReag
Member
Hi everyone, I just want to drop a note of reassurance for people who are new to twitching or new to the board to let you know what your life might be like a few years from now. I was a lurker years and years ago (like from 2003), and way back then I remember thinking "as long as I keep twitching, I will never be able to relax or be happy." So I thought I'd drop by to let everyone know that that is certainly not true for me. (sorry for the long post, but maybe it will be useful for some)A brief history of my condition. I started twitching (with many hot spots, including my tongue) in early 2001. I started noticing what I thought was muscle weakness in my arms and hands a few months later, not coincidentally after reading about ALS online. This all spawned years of anxiety, panic attacks, sleepless nights, visits to numerous neurologists and just an overall miserable few years of ALS-phobia. In 2003 I started seeing a psychologist and I found this message board. Those two things started me on my path to recovery. When I say recovery, I don't mean that I don't twitch anymore because I still twitch all the time. But I started a path of recovery from my severe anxiety, and I can honestly say that I am "cured" from my ALS phobia now. It's also helpful for me to remember that in the years since I started twitching, I have graduated college, graduated graduate school, got married, and now I'm pregnant with my first baby. Looking back, the thing that helped me the most, besides reading everyone's different experiences on this message board was seeing a psychologist. I posted about this years and years ago, but I think it's worth reiterating some points for new people. I was hesitant to see a psychologist at first because to me it felt like I would be admitting that everything was in my head, and it would be denying the real and physical nature of my symptoms. But my anxiety about ALS really started to impact my life and I got desperate, so I went in. The first thing the psychologist said to me was "I am not a neurologist. I am not here to convince you that you don't have ALS." She emphasized that whether or not I had ALS (again, a topic that she wasn't interested in), I needed to deal with my anxiety. At one point I think she even said that if I did have ALS, it would be even more important to get help with my anxiety. So this completely shifted the focus for me away from trying to determine whether I had ALS. I was so obsessed with every tiny thing my body did because I was obsessively looking for some evidence that I either had ALS or didn't. That's what consumed me and controlled me and filled my life with anxiety. So she helped me focus on improving my life without having to answer the question "do I have ALS?" It might sound crazy to ignore that question, but by this point I had seen several neurologists who all told me I was fine, so it was clear that for some reason I couldn't be convinced I was healthy. I think my psychologist realized that very early on, and that's why she continually emphasized that trying to convince myself I was healthy was not going to be helpful. I only saw her for 5 or 6 sessions, but her approach affected my thinking quite a bit.The other thing that helped me was time. I know that it's not very comforting for the newbies to think that they have to suffer for a few months (or years like I did) to get better, but after a few years of twitching, I did get used to it. My counseling, this message board and time got me to accept my fasciculations as harmless annoyances. It was a long road, but I want all the newbies to know that life does get better. I can almost guarantee that for all of you in a few months or years you will feel better and you will look back on this and be so glad you have overcome it. That doesn't mean that you aren't suffering from something very real. I do not think "this is all in your head". But with time and support from others, you will overcome the uncertainty, fear and anxiety that accompany these twitches.I haven't visited this board since 2004, and I honestly don't even think about ALS or BFS that often anymore. I only remembered this site recently because a friend is dealing with anxiety over a possible MS diagnosis and I got to wondering if this wonderful message board was still around.So here is what my life is like now: I still twitch, quite often. I still have hot spots that might twitch for weeks at a time. Over the years I developed a few new kinds of twitches that caused minor relapses of anxiety. Like for a while, I noticed that after I used my hand muscles (like to open a jar or turn a knob on the faucet), my thumb pad would twitch. In my brain, this was completely different than anything that had happened before, therefore this time it was ALS for sure. But these relapses only lasted a few weeks. And after a few episodes of "new symptoms" I even got used to having new symptoms, and now those don't even bother me.When I twitch now, in some ways it feels exactly the same as the twitches I had in the beginning. I mean, it still is a muscle fasciculation. But in other ways, they feel very different, and this is message I want to convey. The twitches feel different now because they don't cause any anxiety. They don't cause a pit in my stomach or my heart rate to increase. They don't make me stop what I am doing and stare at the muscle with uncontrolled anxiety and fear. They are like hiccups or sneezes. Something my body does that I can't control that sometimes annoy me. And then sometimes the twitches are almost reassuring. When I am especially conscious of them, they are reassuring because they remind me of how far I have come since those dark days in college and grad school. They also remind me that our bodies do weird things that we don't always need an explanation for and that that is okay.So for all of you suffering right now, do whatever you need to do to feel better. I never found a neuro that would give me an EMG, but in retrospect, I don't think that would have helped my anxiety because I was so irrational about it. But many people will probably be helped by a clean EMG. So do what you need to do. Keep reading this message board. And know that I have been where you are now. I never thought I would live long enough to finish school or get married or anything. I never felt hopeful about getting better. But I did. And I think in time you all will get better. Someday you will come back to this board and share your story of recovery after years of not even thinking about those muscle twitches even though you still have them all the time. It is possible and I wish it for every single one of you.Good luck to everyone. And thank you all for giving me my life back. I'll be around here for a while, so please let me know if there's anything more anyone wants to know about my experiences.-Erika