Twitching for 9-10 Months

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jc15

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Hi guysI'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.
 
Thanks a lot! That's one of the best posts I have ever read on this board. The admins should (hint hint) sticky it so people in five years will still be able to read it.Thanks for stopping by!-Mario
 
I so value the time you took to write this post. I know your experience will help you in your career. I am also glad to know doctors take BFS seriously even though as you said it is not ALS. Krackersones
 
Hey guysThanks for the kind words. No problem at all.Krackersones it's funny you mention that having bfs might help me in my career. The ALS/MND specialist that I saw is, coincidentally, also a long-time sufferer of BFS and I felt that his empathy really helped me out. I think as a physician, when someone is telling you of a condition that you yourself have, and you know that it isn't sinister, it gives you that much more confidence in your diagnosis. I read somewhere that a lot of health professionals have this condition, so while it isn't overly surprising (since a neuro would be cognizant about neuro symptoms), it was still sort of funny to me. The docs definitely take it seriously, otherwise they wouldn't be giving out the diagnosis. I specifically asked him "is this a real clinical entity or is this a sort of made-up condition that no one really pays attention to" and he said it is the former. And I think that's important. Doctors arent saying you have nothing. They are just saying you aren't dying. I mean it obviously exists in very real forms, look at all of us here who suffer from it (I use the term suffer very lightly, what we go through is absolutely nothing compared to far more serious diseases like ALS).
 
I love this post! It is reassuring to hear from (multiple) doctors--not only that BFS is a real condition, but that it is nothing to worry about. I've been doing this for 14 months now. I still like to check the board to ease anxiety from time to time. This post is better than Ativan!Thanks for posting!
 
What a great post! As someone that has been twitching for about a year, and STILL dealing with the anxiety and stress that comes with it, I want to say thanks. These are the reasons I joined this board, and the positive things I am looking to hear.There's tons of reassurance in what you said, and I just wanted you to know that your post was extremely helpful. I'm still having my ups and downs with this, but posts like yours really can make the difference between a good day and a bad day.-Ant
 
Hi MarioThe problem with BFS and treatment is somewhat paradoxical. On the one hand, the condition is benign, so we dont have much (or really, anything) to worry about in terms of progression to a more serious problem. This is great.On the other hand, the innocuous nature of the condition does not make it very high up on the priority list of neuroscience researchers. The main problem is that research into clinical trials with different treatments (or even basic science studies in the lab) are expensive. And no one is going to grant funding to someone who is interested in alleviating such a mild condition. Think about it; if you were on the board of a granting agency, would you fund the brain cancer, als, parkinsons, MS studies, or would you fund the BFS studies? In other words, researchers have far more important diseases to deal with! I dont mean to undermine our condition (I hate it every bit as much as everyone here, and probably a lot more in some instances!) I am just trying to help in the understanding of why so little is known about treatment and etiology (or cause) of BFS.Ant, thanks so much for such a lovely message!
 
That's fine, that's the answer I was sort of expecting (and the one that had been mentioned here on this board many times beforehand). I was just curious if you were going to verify it. For me I find that the only things that help are sleep, meditation, and distractions. Supplements and vitamins I find to be a complete waste of time.
 
I feel like I have had some real improvement over the last 6 months of my 19 month ordeal. The timing of the improvement coincides with my taking l-carnitine (prescription strength). This supplement has been proven to improve the health of nerves. My experience is not causal proof but the supplement has not caused any side effects and may be worth trying. I identify improvement in the fact that I took two .5mgs of Klonopin for a long time and could not function without it. Now I can easily go with one .5mg tablet at night. Something very real changed. I am not cured but there is improvement.I will continue to update the board on my experiences with various symptom relief efforts. I agree that research dollars will not likely be forthcoming so we are each other's best source of info.Krackersones
 
Great post!Adding something that my two neuros said to me about fasciculations in ALS: usually doctors can see it, but patients can't feel it. So, if we feel all this twitches, it shouldn't be a sign of it. Usually people go to the doctor with other symptoms (like weakness) and the doctor looks for fasciculations, and that's when they are found. That's not our kind of story at all.Carlos
 
Its funny/tragi-funny that a lot of health care workers get it, because I'm a premed student applying to med schools right now, and I just got it in June. Even though it is benign its still super freaking annoying. And my doc doesn't want to give me meds because he says I'm too young. Urgh!
 
Good post. I concur 100% with what you've been told. As a speech pathologist with 25 years of experience in a large hospital based rehab facility I have personally referred around 8-10 patients with symptoms of bulbar ALS that were later confirmed, the most recent being 3 weeks ago--and my suspicion was was correct. It has never taken more than 3 months to get a confirmation. ALS presents with progressive unrelenting weakness. I've seen fasciculations, but not always, in weakened patients, but it is definitely a secondary symptom. I've never seen a patient with ALS whose primary symptoms were fasciculations. Progressive profound extremity weakness, progressive profound dysarthria (speech disturbance), and increasing difficulty with swallowing, until all motor functions essentially shut down--usually within a year. I've never seen anyone go for even close to a year without obvious and disabling symptoms. Ease your minds. Check off the months without a marked clinical increase in weakness--not perceived fatigue. We have BFS which is problem enough. We do not have ALS. By the way lilithgrrri--you're right--it is most common in health care practitioners. Now that is a *beep* mystery.
 
Thank you so much! for the neuro info you posted...I am so nervous...I have a meeting with my neuro tomorrow..I have been doing everything from measuring my squat fatigue to standing on one leg on my tiptoe and seeing how long I can do it (very hard)..I started by having a rolling twitch under my knee cap..At the time I was stressed, but more importantly I had been doing a lot of circuit training and training for a 5 k..It has been almost 3 weeks now...I have essential tremor as a diagnosis..My twitches go from my knee to sometimes starting higher on the thigh...I am really praying for good news at my clinical exam tomorrow...but I am considering doing an EMG just in case...So scared..Thank you thank you thank you..
 
I've just been to a follow up appointment with my neurologist.Everythings fine, and as a last questions i asked him, why never was interested in my twitches and he even never look at them?He replied:Because im not intererrested in your twitches. In my 20 years as a neurologist there has never been a patient with ALS coming to me because he has noticed the twitches. And I've seen a lot of ALS patients the years i worked at the University Hospital.Twitching alone means exactly this: NOTHING. Greetings,LevenLevi
 
This place is a godsend for people like me. Everytime I twitch I go beserk thinking to myself "Oh god this is it my life is over" and then I run to the doctor only to pass a neuro exam. No EMGs but they all keep telling me I don't need one. My advice to everyone(I'm sure you've heard this before) stay away from Dr. Google. He doesn't help anything he only makes it worse. I really want to know what's the best way to manage this? Because it's not only annoying for me but its really distracting especially with the parathesia and joint popping.
 
I have noticed improvement of symptoms after reducing the amount of ambien I have been taking. I have been on ambien for 4 years taking it every night and I think long term use of z and benzo meds can be a cause of bfs. I would bet that allot of us were on some sort of these before we developed symptoms. I am getting rid of that junk in the hopes my brain will go back to normal someday. I used to take 15 mg every night and I am down to 4mg now. The twitching isessened and does not hang around long. It will even dissapear for hours at a time now. I have been twitchy for 2 months now.
 

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