Sickoflosers
Member
This post has been a long time coming. I would love for you to read it in its entirety, as it is addressed to the members and moderators of this forum. As Thanksgiving approaches, I believed its appropriateness was spot-on, as it is heartfelt and sincere in its entirety:3 years ago, in my early 20's, I started this long, stressful journey into the BFS world. Articulating the uncertainty and roller-coaster of emotions that come with the onset of this disease is so hard to convey to others, who just never seem to understand. Before all of this began, I had always struggled with anxiety, but never in a way that was an issue. I just needed to take five minutes, relax, and I'd be over and done with whatever was bothering me. Then came along BFS. I, like many others, got on the internet and googled my symptoms as soon as they began. Without going into detail, we all know how that turns out...it isn't pretty! I came across Benign Fasciculation Syndrome as an option of what was causing my symptoms, but of course went straight to the worst possible outcome (it shall go unnamed). I began doing as much research as I could, and after speaking to my father, found out that his uncle suffered from the disease after the war (as many veterans did apparently - but that's a whole different topic). So naturally I thought: "oh no, I've inherited this disease, I'm going to die." My anxiety spiraled out of control and I began to feel things I've never felt before.Luckily, I had a GREAT doctor, whom right away, sent me for every blood test/scan/neurological exam that was possible. Within the first 48 hours after my initial visit, I had over 11 vial's of blood taken. Then came the 3 MRIs and an MRA. All clean, but still, I was completely and utterly terrified of my potential fate because I had not yet visited the Neurologist. The stress was overwhelming.........then it happened.......I found this forum. I have been a silent non-member for 3 years. Just an internet bystander reading almost every single post ever written by all of you that are brave enough to share your own personal stories. This forum has brought me peace, certainty in an uncertain situation, and undying support every single time I needed it throughout my emotional struggle. My condition has significantly improved, and I credit that mostly to the tips I've read from everyone here; not to mention what it does for my stress level! To go through something so initially terrifying is draining and daunting. I missed out on a few years of life (that are supposed to be the most fun) out of genuine fear of this turning into something worse. Every day I measured my strength, or analyzed a "new symptom," but when I was feeling really awful, I remembered that you were all here, going through the same ups and downs, and I'd come on and just read and read and read and read. Sometimes for a few minutes, sometimes for many hours at a time. I'm tearing up as I write this because I mean it so sincerely; you really can't possibly begin to imagine. You all have been my saving grace. I don't know anything about you, or your personal lives, or even the other struggles you deal with day to day. What I do know, is that if it wasn't for you, I would have probably had a nervous breakdown by now (and that is not an understatement). So as a previously silent bystander, I want to finally speak up and say THANK YOU. This has been a long time coming for me, and has taken me quite a while to sit down and write. I wanted to make sure I was able to express myself in a clear and concise way without it being too long for anyone to read through and hopefully I have done just that. Please continue to do what you do, as both members and moderators. I don't think you really grasp how far your reach is, and how much you help people get through such hard times emotionally and physically. Since I couldn't thank each of you individually, this is the best I could do. I hope you accept this giant hallmark card from me to you, and realize that you have made a tremendous difference in at least one person's life, just by sharing your thoughts, feelings, triumphs, tribulations, and discoveries. Isn't that what life's about anyway? Here's hoping the world continues to showcase more people like yourselves.Thank you again,StayingStrong
thanks right back at you. So glad you could find some help from the forum, some of us (me at least) wonder about it, if it is better to share some of it or just stuff it, but your post helps to show it does help some. No more stalking OK? Jump in there once in a while - after 3 years you for sure have some tips to share. My perspective is that if it just helps out one person to post a comment, reply, or put in a post about your own ways of managing symptoms, then it is worth it.
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