by JB15 on March 4th, 2010, 4:34 pm
Hi guys
I'm a newb to this forum, but not really to twitching. I've had twitching for about 9-10 months now, starting in my left knee during a stressful bout of insomnia and moving to my right arm just below my elbow, my right middle finger, my left index finger, and these days, both of my thumbs are crazy twitchy (moving my thumbs, jerking them side to side sometimes etc). I've also had calves, shoulder, face, under my chin, my ear, etc....basically everywhere.
Anyway, I have a PhD in molecular neurobiology and work very closely with a lot of neuro clinicians. One of my best friends is a neurosurgeon. He referred me to a neurologist with a specialty in motor neuron disease for my own reassurance (even though he tested me in our office and said I was fine). He knows I'm neurotic and would benefit from seeing him. I went to the neuro who did a full clinical workup, and he diagnosed me with BFS. I was really nervous: as nervous as you guys. In fact, my birthday was 2 days before the appointment with him and when my girlfriend gave me her card (which said some shmultzy stuff about us being together forever) I absolutely broke down crying, thinking about the possibility that I might not have many more birthdays (all from muscle twitching, crazy I know!).
Anyway, 3 months went by, and the twitching in my left knee came back (i had other intermittent twitches too). I went back to the neuro, and he did another clinical exam. He said there had been absolutely no progression, the possibility of ALS was zero, and "that people that come in with muscle twitching NEVER have ALS." He said that twitching is NEVER the first sign of this disease, and that by the time the twitching occurs, there is noticeable weakness upon clinical examination. He also said that people with ALS have weight loss, and noticeable atrophy. There is a clear difference between these patients and patients with BFS. Also, like some of you, I have brisk reflexes too, and even some clonus in my ankles. All from anxiety he says. There is a clinical difference between brisk reflexes and hyperreflexia.
Is this due to stress? Right now (and for about the last year) I am going through THE most stressful thing I have ever experienced in my life: MD applications (I want to be an MD/PhD). I am being scrutinized from every angle, had to write essays, attend five hour interviews, and wait and wait and wait for responses. It is brutal, and it's killing me! And I've seen alleviation of the symptoms when I'm less stressed; I went to costa rica with my gf in the winter, and my twitching was gone. On the very last day of the trip when it was time to pack to return to the snow, my finger started up again. All I can do is laugh about it now.
Anyway, another one of my close friends is a med student (also with a PhD) who works in a neuro clinic. On my request, he also asked his neuro buddies (that is, staff neurologists) about my condition. All of them too said this does not present anything like ALS.
So we have in total: a neurosurgeon, a board-certified neurologist with a specialty in MND/ALS, and multiple other neurologists who have all said the same thing: This is BFS. It has gotten to the point now where my neurosurgeon friend makes fun of me and my twitching. He said he has never been so confident of anything in his life. He also said not to dismiss BFS as nothing. He said in med school and in residency training they take BFS very seriously, as it is a recognized disorder of the nervous system. Just because it isn't fatal, doesnt mean it isn't a real physiological response.
By the way, I am at the University of Toronto, a leading academic institution that is INCREDIBLY competitive to get staff positions in the affiliated hospitals. So all of these guys are smart smart cookies.
I still twitch a lot, and it still bothers me incredibly because its annoying! For crying out loud my thumbs are moving themselves! But I've realized something. I work out vigorously 3-4 times per week (I just finished an incredibly strenuous and intense circuit at the gym!). I play fairly high level ice hockey twice a week. These are tragically, not things that people with ALS can do. When you have ALS, your muscles are dying. The nerves are degenerating, and they fasciculate because of that. But when your nerves are dying, your muscles just dont work. You dont have to test yourself 400 times a day to see if you're weak; If you have weakness, you will know. And it will not go away. ALS is a devastating, terribly sad disease that does not get better. It doesn't come and go.
Anyway, I just wanted to share my story and my experiences. Please try to take some reassurance if you're worried.