A note of reassurance

[JB15]

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.

[MarioMangler]

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

[jro]

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.

jro

[JB15]

Hey guys
Thanks for the kind words. No problem at all.

jro 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).

[twin2]

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!

[sylvia]

thank you so much for this very reassuring post!!!!
take care, sylvia

[JB15]

Well I don't think anything is better than ativan. I love that stuff!

[garym]

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

Good suggestion, and a great post....done!

[MarioMangler]

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).

Here's a question for you that I didn't see you mention anywhere. If doctors take BFS seriously and recognize it as a legit condition, what do they tell people to do about it? Is there anything other than sleep, relaxation, exercise, and possible anxiety meds that actually treat BFS?

Thanks!

[Antne9]

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

[JB15]

Hi Mario
The 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!

[MarioMangler]

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.

[jro]

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.

jro

[carlos]

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

[JB15]

Carlos you are bang on, thanks for pointing that out, because you're absolutely right.