Hello, I'm Amy...and can I just say that I'm crying tears of joy right now. I have been twitching--basically non-stop--in random areas of my body for almost one year now. I have searched high and low on the web and unfortunately have only scared myself sick over ALS and other nm diseases. I don't know why it took so long for me to finally locate this site! Here is my story: I am now 30 years old. About a year ago, I had a horrible headache that lasted two weeks. I was dismissed by my PCP who said it was just a tension headache. (I am not normally prone to getting headaches). Once the headache ended, I had an episode of about 10 days of tingling or pins-and-needles sensations all over my body, but mostly in my limbs. Went back to the doc who said "it's just anxiety". About a week after that, my right toe started twitching, and I could visibly see it moving back and forth. This quickly progressed to a constant buzzing sensation in both my feet. I was also experiencing some joint pain and generalized fatigue. I went back to my doc who finally agreed to do a slew of blood tests. Turns out I had a positive ANA (anti-nuclear antibody) test, which my doc said: "well, this is fairly common in women your age, but I'll send you to a rheumatologist to rule out autoimmune diseases, mainly lupus. He also ordered an MRI to rule out MS. The positive ANA is very common for both of these illnesses from what I've researched. Well, turns out my MRI was NORMAL and the rheumatologist basically laughed me out of her office because I had no clinical presentations of any autoimmune illnesses. I was relieved...but then the twitching started up in my calves...then forearms...then shoulders...then back...then thighs. I'm a random popcorn machine. Back to the doc I went, and he sent me to a neuro...though all along he's rolling his eyes at me and telling me I'm just too stressed out and that absolutely NO neuromuscular disorder presents itself in this pattern. The neuro I saw performed the most basic of exams (walk in a line, touch your nose, stick out your tongue) and that was it. He shrugged and said: you have BFS. I said, well okay then (I had been researching on the web, and amongst the thousands of ALS web sites I retrieved when typing "muscle twitching" I did run across a couple BFS sites) and I was very relieved to hear him say this. I asked, what causes this, and how long does it last?....To which he said: "I don't know and I don't care because it's not going to kill you". He wasn't being rude--just trying to reassure me by making light of the situation. I walked out of his office feeling relieved, which only lasted a couple days. All I could think to myself was that he didn't perform any actual nerve conduction tests, so how could he be absolutely sure about BFS? Also, how do any of these docs know for sure that I'm not in the early stages of ALS or MS or PD and they just haven't figured it out yet. When I went back to my PCP with my concerns, he rolled his eyes yet again and told me to find a shrink. I told him good-bye. I have found a wonderful new PCP and she along with her assistant have been very good about helping me really understand what's going on with my body. They swore they'd never push anxiety/depression as a diagnosis unless they were absolutely concerned everything else had been ruled out without a doubt. They sent me to another neuro who did the full EMG and muscle needle test. Everything is NORMAL! They are also going to order another MRI of my brain and spinal cord this time (my first one was of the brain only). This BFS is one strange mother of a condition. You can't help but stress out when the twitching starts up somewhere new and persists for days. Lately I've gotten it for the first time between my thumb and forefinger on my left hand. It must twitch hundreds of times a day and I often can see both fingers move. I also have random twitches in the rest of my muscles--but none so consistently. I'm sort of leaning towards this being some weird viral condition--just because mine started with such a nasty headache and because the twitching comes and goes in such weird patterns and frequencies in different muscles. Nonetheless, it sucks. That said...I also feel horribly weird about making such an issue about it with these different doctors. I HAVE to be 100% certain that every test has been done to ensure it's a benign condition. Then I feel like a butt for taking up valuable doctors time when there are plenty of people out there who are dealing with conditions that are not benign. I still have a ways to go to get myself feeling comfortable that the doctors have ruled out everything else---but I AM getting there. I am so thankful I just found this board, I could shout for joy! I am a mother of two small boys, and the stress of this syndrome is taking it's toll on me. I'm stuck in a black hole of worry one moment, and then I have to turn around and put my best face in front of them so they don't see their Mom so worried. It's an up and down roller-coaster....and I'm so glad I've found you all so I know I'm not riding it alone! I'll keep you all posted as I have further tests done....I'm one year into this BFS diagnosis, but I do still think there are some other things to rule out (as does my doc) before we start looking at Generalized Anxiety Disorder. I don't feel depressed or anxious, but this does run in my family---so maybe it's now manifesting in me in a more physical way versus mental. Who knows??? Glad to meet you all!!!!
Amy
Amy
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