Trouble Dealing with BFS

Information about how to manage or reduce the severity of BFS symptoms

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Trouble Dealing with BFS

Postby HonkeyKong on October 1st, 2014, 10:59 am

My first post so I'll give a quick overview. I'm 31/m and I was pretty active, usually playing sports about 5 nights a week until i got my face smashed playing flag football (ikr... flag) and had surgery on 7/2 to repair the damage. I wasn't allowed to lift weights or exercise while I healed. So about two weeks after I got hit, my left tricep began twitching all day and got worse toward night. A week later, my right tricep joined in. I ignored them and chalked it up to my lack of exercise. on 7/24 i woke up with cramping and stiffness in my left hand around my thumb and webbing between the thumb and index finger. So I got a little annoyed and searched the net and boom.... found ALS. I immediately had extreme anxiety and went to see my GP. My bloodwork (vitamins, lymes, thyroid) all came back normal so he referred me to a neuro at Penn State. The neuro seemed to be top notch so i didn't question the clean clinical and clean emg (left arm only, 8/2) not even a faciculation recorded on it. My sypmtoms continued progressing, twitching in the arches of my feet, both shoulders, triceps, thighs. So I finally called and asked for a second opinion and was referred to a MND specialist at Penn State. I had another clean clinical and had a right side EMG that only showed facics in my right tricep and nothing else. She told me I have BFS which brings me here. As of today, my left shoulder tremors and twitches constantly and right foot (arch) twitches. I'm also perceiving my left shoulder as weak at the moment but can still use it without any problems and I can still push a good amount of weight on the bench (anxiety strength test) . Does anyone else have similar issues with their shoulder and/or feet? If so, how do you manage the symptoms. They're frequent enough that they affect my work and life in general. I've been taking a daily vitamin, anti depressant, and magnesium to combat the twitching but to no avail. Thank you in advance for any insight!
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Re: Trouble Dealing with BFS

Postby misterjuanperalta on October 1st, 2014, 1:44 pm

Try to take control of anxiety. Inform yourself well. Keep a journal of symptoms for your doctors. Don't worry, as it often leads to wrong conclusions.
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Re: Trouble Dealing with BFS

Postby HonkeyKong on October 3rd, 2014, 10:39 am

My anxiety level, at least from what i can tell, is a lot less than before, but i just seem to be twitching more each day. I've kept myself pretty busy to try and keep my mind off of it, but the sons of guns just won't quit. The left shoulder has been very annoying and any time i move my arm, it will twitch a few times as soon as the movement has stopped. I'm more or less just inquiring what others do (if anything) to help their symptoms.
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Re: Trouble Dealing with BFS

Postby MarioMangler on October 3rd, 2014, 12:39 pm

Exercise more (but don't overdo it, just stay active)
Sleep more
Eat better
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Trouble Dealing with BFS

Postby HonkeyKong on October 3rd, 2014, 12:46 pm

MarioMangler wrote:Exercise more (but don't overdo it, just stay active)
Sleep more
Eat better


verbatim what the doctors told me.... I'm ... well was, an athlete. I quit all of my sports after my accident, but i do about 30-60 min of cardio per day. I quit lifting weights and have replaced it with push ups, tricep presses, and other body weight lifting techniques. I've quit alcohol and coffee and each under 2000 calories per day. I've been sleeping more, but have had to unisom to help out with it.

I'm looking more toward supplements. I've been taking a one a day vitamin along with a magnesium pill. i know there's not a magic pill out there, I'm just curious if anyone has had any luck with any over the counter pills/supplements that have reduced the constant twitching.
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Re: Trouble Dealing with BFS

Postby MarioMangler on October 3rd, 2014, 12:56 pm

I have never personally had any luck with supplements. I have tried Vitaman B12, Vitamin D, I have tried magnesium, garlic, magnesium oxide, all of it. BFS just seems to sort of appear and disappear on its own. It follows its own schedule.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Trouble Dealing with BFS

Postby trustme78 on October 4th, 2014, 10:44 am

I did

Vitamin D
B-Vitamins, especially B12
Magnesium / Calcium (to get the proportion right)
Magnesium topical spray
Alpha Lipoic Acid
Q10

and I removed sugar and grains from my diet. I played around with a ketogenic diet too but it's a lot of work and really limits the choices you have regarding nutrition.

My twitching is a lot better (I track my symptoms with an IPhone App called Track&Share - you don't have to share, you can use it to track only ;-) ) but of course I can't say with confidence whether it's time passing and my body healing or the supplements that improved my situation.

Oh and one thing I noticed. My symptoms flare up after taking IP-6 (inositol). I am testing this right now. It happened two times. I was almost symptom free, started taking this supplement and on the very same day I had increased twitching.

With supplements I would advice not starting everything at once but introducing it slowly and looking at patterns and symtpoms. I didn't follow my own advice. I was so desperate and started taking everything at once because I needed to do "something". I needed to feel in control.
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Re: Trouble Dealing with BFS

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