Hi Anne-I completely understand how worried you are regarding this. But you have to understand that your neuro's know what they are doing. We seem to overlook all the patients they see with things that ARE wrong and think that they were wrong with us. Trust me I deal with this on a day to day basis and I have been told it was benign for over a year now. I have had all the tests and BOTH my neuros did their intern at the MAYO. But the last one told me this, and without going through all of it here is the best thing she told me."Sean, after you had symptoms and then an EMG if there would have been ANYTHING wrong at all the EMG would have picked it up. Not only that but your clinical exams would have shown issues that would have led to more testing". " Someone that has had twitching and goes to see a neurologist after a month or so can be COMPLETELY confident that with a negative clinical exam and EXPECIALLY further tests (EMG's) that nothing is wrong. Sean you have BFS and people can have it for months and sometimes even a lifetime, most see a decrease in symptoms after 2-3 years but some do not". So she saw my twitches all over, saw my cramps (I can induce them in my calves) and saw my tremor! She said "we dont need to do any more testing, had this been anything bad you would have known a LONG time ago". Then she told me that NO meds will help the twitches. You can take meds that will dull YOUR sensation but nothing will slow or stop the twitching, I have taken Neurotin (gabapentin) Tegretol, Baclofen for the twitches. Then I have also taken Celexa, Effexor and something else I can think of. She told me to IMMEDIATELY stop any SSRI because they will make the twitches worse, and she was 200% correct. It took about 2 weeks for them to come down, but as she said I only needed Effexor to deal with my extreme anxiety. Since I was over it, I didnt need anything else. So she said that people should take the SSRI's if the panic is impacting their daily lives, however removing them will decrease most of your symptoms. So you may want to consider this, I dont know how long you have been on them. But once you get to the point of not being worried anymore, stopping the SSRI's will slow the twitching tremendously! Please go back and read my posts. Ify you go back a few months you can see exactly what my neuro said and it should help you very much. I typed it up within 2 hours of leaving her office so it was fresh in my mind. Best of luck to you, but after all this time and all the tests they did not miss anything! They are experts in what they do, and you are completely out of the time frame for anything bad. Twitching with no weakness means nothing...and its not "I think I am weak" its MAJOR clinical weakness they can pick up right away. Just make sure to not get on the ALS websites and stick to what you have which is BFS. Its annoying, seemingly never-ending and will drive you crazy. But thats all it is, and you have already been given the green light to move on and live! Sean
