MarioMasher
Well-known member
Hi there. Since I officially passed my one year BFS anniversary this week, I figured I would pop in and give everyone an update. Mostly to assure all the newbies that nothing you have is going to kill you.First off, let's play this card at the beginning. You don't have ALS. No one here does. Now that that is out of the way...The first twitches I really noticed were in my face and nose. It happened one day when I was bored during a training class at work. I was just sitting there, bored out of my skull, and I noticed that the side of my nose was "fluttering," I couldn't think of a better word than that, the muscles there were just spazzing out. Now normally this wasn't that big deal to me. I have had weird twitches and muscles issues all of my life. My right calf has always tended to cramp up when I am sleeping (that HURTS!) and my eyelids and eyebrows have always been tired and twitchy. This is probably because I spend way too much time in front of a computer (I am a programmer) I have always attributed my eyelid twitching to the fact that I basically have permanent eye strain from sitting and staring at a computer screen all day.So anyway one day the side of my nose started fluttering at work. Then a couple of days later, my ankles developed this weird buzz in them too. It was weird, whenever I would lay down or try to go to sleep, the muscles around my ankles would just buzz away like I had just finished running a marathon. It was a little unnerving.And then came the twitches on the back of my neck.Now when my neck started twitching, it started to worry me. Uh oh. Do I have some sort of neurological problem going on? Because as far as I knew, buzzing equaled MS. That was what I had always heard. So I looked up MS symptoms on the internet, and sure enough I had a bunch of the symptoms. Buzzing. Jelly legs. Weird light flashes behind my eyes when I closed my eyes. Intermittent leg and muscles weakness. All it took was one search with good old Dr. Google, and I managed to diagnose myself. Which, as any oldtimer will be able to tell you, is ridiculous and pointless. Because as I learned later on down the road, you can't diagnose yourself. It is impossible.Anyway, since I now "knew" I had MS, I ran to my doctor. She said no, I don't have MS. She said if I did, I would be stumbling all over the room. She even pointed to a recent MRI I had taken (for chronic headaches) which said my brain was free and clear of any abnormalities. She said that was the proof I needed. I asked if she thought I should maybe see a neurologist. She didn't think so, but to humor me, she gave me a referral to one. And this is where the fun began.In between my doctor visit and my neuro visit, that is when the twitches started all over my body. BAM. From head to toe, it just happened one day. Every single muscle in my body started going crazy. I have no idea why it started, or how it started, but suddenly I was buzzing and twitching from head to toe. And... as you can guess... IT FREAKED ME. THE F--K. OUT. My scalp. My cheeks. My lower lip. My calves. My feet. Everything was spasming.Since my neuro visit was still a few weeks away, I of course went to the only Dr. I had available to me at a moment's notice. Yep, that's right. Good old Doctor Google. I went to the internet and googled "muscle twitching" and "leg weakness." And... well... you can guess what came up. That's right. Now I had officially diagnosed myself with ALS. Or, as I knew it better, "Lou Gehrig's Disease." I knew I was going to die.At this point let me add something that is important to my story. I am a well-known hypochondriac. Oh yes. I have been dropping false diseases and false conditions and weird panic attacks on my poor wife for years. Every time she turns around, I have diagnosed myself with melanoma, or cancer, or lupus, or worse. She is incredibly tired of it. So the minute I "knew" I had ALS, I had an important decision to make. Should I go tell my wife that I have an incurable disease that is going to leave me dead in six months? Or should I not bother her with this info, since I haven't technically been diagnosed with it yet? I knew that the minute I told my wife, "By the way, I have one of the most obscure and fatal diseases in the world", she was just going to roll her eyes at me. Because, you see, I have a history of doing this to her. So on top of the stress of "knowing" I had ALS, I now also had the stress of not being able to share it with my wife. For a person who is generally very anxious and stressed out and twitchy anyway, now I was pretty much engulfed with anxiety 24/7. All I could think about was this horrible fate that now lay ahead of me, and how I would have to suffer in silence.Why do I point this out? Well because it is a common theme in many of the stories you will read on this board. Yes, anxiety is a big problem with BFS. Yes, stress and panic attacks are two of the things that can make it worse. All of those things are proven. But do you know how many people on this board describe their stories the exact same way I just described mine? Do you know how many BFS sufferers will start their stories with the phrase, "This isn't the first health scare I have had..."? Do you realize that almost EVERY single person here will use that phrase at some point in their BFS history?That can't be a coincidence.So anyway, I went to my neuro for the first time in August 08. I went in, and I explained my symptoms, and I asked him, "Please just tell me I'm an idiot. If you call me an idiot, I'll go home happy." Because even though I was in panic mode (as all BFS people are at first), I also knew how many health scares I had had in the past. I knew that "this is all in your head" would pretty much be par for the course for me. Even though I was frightened, I wasn't an idiot.My neuro listened to all of my symptoms and he said, "Well I can't call you an idiot, because doctors can't do that." I asked if I should be worried. He said, "None of your symptoms worry me in the slightest." I asked what he thought was going on with me. And this is where he said the phrase that really saved my life, and took away all (okay, most) of my anxiety. He said, "There is something called benign fasciculation syndrome..."Once he turned me onto BFS (which I had never heard of before), I went back to the internet. And this time, instead of using it for evil, I used it for good. I tracked down a wonderful essay called "BFS in a Nutshell", written by Alonzo Johnson. Which, of course, led me to bfsforum.com. Which led me to many of the wonderful oldtimers. Which, of course, was the key to my recovery.I came to bfsforum.com in August '08, and I scoured the archives. I mean, seriously, I read through every single post in the history of this board. I wanted to know exactly what was going on with me, and how to get rid of it. And do you know what I learned from my research? Do you know what the overall message is from the very first days of this board?Here are the lessons you need to learn about BFS. Any old timer here will tell you this is 100% true:1. BFS is not fatal. It is not ALS. It is not even close to ALS. Do not ever try to compare the two conditions, because they are totally different.2. Twitches are only scary if you let them be. In and of itself, twitching means nothing. It just means your muscles are tired or overexcited.3. BFS gets better in time, but it will probably take a while. And when I say a while, that will be different for each and every person. For some people it could be weeks. For some it could be years. For some it could even be decades. But BFS will always lessen and start to fade away once you make peace with it. You just have to learn not to fuel the fire by giving it stress chemicals. Stress is the absolute enemy of any BFS recovery. You have to learn to take away its fuel before it will start to get better.4. Does anxiety cause BFS? Or does BFS cause anxiety? Want to know the real answer? Well here it is. Ready for it? Here is the biggest pearl of wisdom you will get on this board. IT DOESN'T MATTER WHAT CAUSES BFS. The faster you learn not to care about the reason, the faster you will recover. Because it makes no difference whether you find out the cause or not. Odds are you will never find out the reason. And do you know what? That's perfectly fine. If you insist on chasing a cause for the next 10-20 years of your life, all you will do is drive yourself crazy. Because all that means is that BFS isn't your only problem anymore. Now you have OCD to go on top of it. Do you really want OCD plus BFS? Isn't BFS enough for you? Why choose that path if you don't have to?5. Your reaction to BFS is always a choice. Remember that. A CHOICE. You choose how to respond to your twitches. You choose whether to mope about your condition, or just move on with it. You choose to spend endless hours glued to the internet, doing research. You choose whether or not to have test after test, and spend thousands of dollars. These are all choices. It is all up to you. Remember that, you aren't a helpless pawn in your BFS treatment. "Doing nothing about it" doesn't mean you are giving up and quitting. "Doing nothing about it" is often the most effective treatment for hyperexcited nerves. As one of my programmer friends tells me all the time, "Motion disguised as progress isn't necessarily progress."6. Get lots of sleep. If you don't sleep, your body can't heal. I have never seen a case where more sleep doesn't lessen the symptoms.7. And here is my favorite piece of advice for anyone. Commit this one to memory, okay? If a doctor has tested you and told you you are fine, then BFS is no longer your problem. At that point, if you still have doubts, then the problem is YOU. It's unfair to blame BFS if you don't know how to be a rational thinker about things.So anyway there is my one year update. Once I was cleared by a neuro (in October '08), things have gotten much better for me. Oh I still twitch of course (especially in the quads and calves), but it has never gotten any worse. In fact some days the twitching seems to go away altogether. It's weird, I just lay back and have no twitches in my legs, and it feels so odd. I sort of miss them. But I DO still have twitching (despite being on Lexapro for 4 months), and I still have intermittent leg weakness. The only difference is that I long ago learned not to care about it. I also decided a while back that I didn't want to be the type of person who always tells people "My neuro said X..." or "I asked my neuro about Y..." I was sort of embarrassed that I even had a neuro. Normal people aren't supposed to have "a neuro" in their life they can just casually drop questions on all the time. Neurologists are called specialists and charge more money for a reason! So once "my neuro" cleared me, I was done with him. No more appointments, no more tests, no more follow ups. Once you have been cleared you don't need to be cleared again. If a neuro missed something big, like ALS or MS, they would laugh him out of the hospital.In summary, after one year, I still have BFS, but BFS is just no longer a significant part of my life. I stopped thinking of myself as "a guy with BFS", and started thinking of myself as just "a guy." So what, so I twitch once in a while. Big deal.Once you get to that point in your thinking, you will begin your recovery.Hope to see you here soon. 
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It really IS just a matter of ignoring the goofy twitches and they'll either go away or become far less significant in our lives. Thanks for sharing your awesome testimony. blessings, Sue