Online Journal for JULY 2004

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

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Online Journal for JULY 2004

Postby amy_twitch on July 13th, 2004, 1:41 pm

Hi fellow BFS sufferers! If any of you are interested, I'd like to start a series of posts each month related to our BFS cases....sort of like keeping an online journal right on this site.

We can post a new header each month like: "July 2004 journal"....and all of us can add our thoughts/experiences for the month. Things to include would be: current symptoms--and if they've improved or worsened since last month: updates from recent doctor visits (if any) since last month; any new medications you might be trying and if they are working or not; and overall mental outlook about BFS...are you staying on top of it, or are you letting it get to you. Chime in any time during the month!

This isn't meant to be a Q&A forum--just a running journal of how we're all doing each month and to see how far we've come. I haven't been very good about keeping my own BFS journal at thought I'd give it a go here on this site.


I can kick us off for this month:

July 2004: Since last month, my hot-spot between my left thumb and forefinger has FINALLY stopped buzzing. In fact most of my twitching has been subdued, so I must be in a 'slow' period. Fatigue and pains have been more prevalent---I think I'd rather have lots twitching and all of my energy back instead of persistent fatigue.

I saw my neuro again early this month for 'reassurance' and to verify that my EMG could not have been done 'too early'...and she completely validated what everyone here has been told....I don't have ALS or any other neuro disease. etc etc..

I'm not on any meds other than acetaminophen for my aches/pains as needed. I'm trying to eat as healthy as possible and get good sleep.

Mentally, this has been my best month. I finally accept deep in my heart that nothing neurological is wrong with me. The fatigue and twitching is still frustrating---but I'm far above it and oh so happy! Thank goodness for sympathetic doctors. And thanks to everyone on this board! We need to help each other reach 'the good place' and stay there! That's it for now...we'll see how things change next month!

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Postby seeking_calm on July 14th, 2004, 3:02 pm

hi Amy. Ok, I'll give this a try...

July 2004 : The first week did not start off good. A combination of twitches/buzzing and other unrelated physical problems put me in a cranky mood. Usual twitch spots---foot, calf, thigh, knee, hip area. New spot--lower lip. On top of that my lower back/hip pain has flared up again. It seems to favour my left I am beginning to wonder if I have sciatica. Swell. :roll: On the positive side, the anxiety attacks and broken sleep I had last month are now history. No cramping or fatigue either.

I finally saw a neuro! And can I just say how much I hate wearing that paper gown thingie. I couldn't figure out what the plastic ties on the side were for since they didn't seem to reach. The neuro checked my reflexes, made me walk on toes/heels etc... Everything was A-OK. She also ran an NCV test on my left leg(hello? electrical shocks I was not expecting on first visit!). She said test results were sign of peripheral nerve damage in my leg. Now she wants me to get an MRI to rule out stuff like MS. So no official diagnosis yet, but at least I didn't get any bad news. I'm no longer worried about ALS or PD anymore...although the MS possibility remains at the back of my mind.

I'm still taking the usual supplements (Cal-Mag, B12, Vita-Vim multi) though I doubt they are doing anything for me. So maybe I'm just trying for a placebo effect :wink: I've gone back to practicing Tai-Chi and hypnotherapy to bring some balance to mind/body.
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Postby Floater on July 14th, 2004, 7:37 pm

July 2004 : twitching as normal...buzzing and leg pain are mostly what i deal with after work.. my palms are red but dont feel as imflammed as they use to. liver function test remain slightly elevated but at its lowest point so far. still taking 800 mg of sam-e a day with b-6, b-12 , and folic acid. 1 mg of klonopin in the evening. july is the greatest month of the year(and you know its true)... had bfs for 19 months going on 20 in august
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Postby garym on July 14th, 2004, 8:49 pm

July 2004

Started out pretty good. I have been having less muscle fatigue/pain for the first time in over a year (just passed my 1 yr anniv. in June). But today 7/14 i have been experiencing some of the worst twitching, burning muscles, cramping and overall discomfort that I have felt in probably two months. I'm trying not to get discouraged because I have learned that is a sure fire way to give back any progress I've made (both emotionally and physically). I don't/won't allow myself to back slide into anxiety/panic. So overall, July 2004 has been a ton better than July 2003, and that gives me hope. Even if i feel like crap presently.

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Postby puggriffey on July 14th, 2004, 10:58 pm

Great idea -

July 2004: So far, it's been a frustrating month. Despite a really good June, including some twitch free days at the end of the month, July has pretty much been non-stop twitching and a really annoying general pain/fatigue in my left leg. Given that the bulk of my twitching this month seems to have been concentrated in my left leg also, it's really been a challenge to keep all negative thoughts out of my mind. But, overall, I think I've done a good job keeping stress free, and I'm not letting myself dwell too much on the "lost progress" from June.

Overall, my tongue/neck/head have been really good for a week now - I'm not sure I would have even thought about that if not for trying to do this "journal" - this is a really good idea to keep a "gut check" on something that can go on for a long time.

Thanks all!

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Postby speg on July 15th, 2004, 8:54 am


Last night I decided to test my strength again, walk on toes and heels, and hop around on each foot. The hopping got my adrenalin and heart rate going, and caused my twitching and buzzing to get worse! Anyway, watch out for what you wish for -- cause you might just get it. I began to twitch in BOTH calfs. I sat and watched my right calf pulsate -- big, visible twitch just like my left leg. So, now I have joined the club. Today, the twitches are still primarily in my left leg -- but now I know for sure I am not a "one limb" twitcher. That combined with the right eyelid twitching SHOULD make me feel better, right?

As far as meds go, my doctor gave me some valium, and for some strange reason -- it makes it worse! I haven't tried the muscle relaxers yet (I have a feeling they will not work), but some old klonopin immediately calmed me down and made the twitches subside by 50%. I just don't know where I am going to get another prescription.

But I doubt klonopin works on ALS, I doubt ALS patients can hop around like that, and I just feel if I had ALS and my leg had been twitching this bad for 8 weeks, some sort of weakness would have showed up by now. I mean we are talking big, leg moving thumpers here -- no weak little twitches. Oh, and I have big time buzzing in my left leg and foot. And creepy crawly sensations . . . sensory stuff. (I've had this for years, usually when I am highly anxious.)

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Postby Ginlyn on July 23rd, 2004, 7:59 pm

July 2004 - twitching was sort of on/off this month, although mostly "on". I had a few days of being relatively twitch free.

The past few days I've had pain in legs and arms, sort of an achey type of feeling.

I'm still exercising, I believe getting stronger. I now walk between 4-5 miles 6 days a week. Mentally, could be better. I freaked myself out a few times, but due to the people on this board, I'm doing a lot better than "normal". I see my GP the first week of August. I will make him to another reflex exam, of course.

I continue to eat healthy, exercise, but sleep is another issue. I'm always "sleepy" lately, too.
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Postby Twitchy on August 3rd, 2004, 11:22 pm

July has probably been my best month since I was diagnosed 10 months ago. I still twitch but it's not nearly as bad as it use to be. I now realize that most of my symptoms WERE stress and anxiety related. I'm finally going on with my life and most of the time I don't even realize that I am twitching which is now almost only in my calves. Also started physical therapy to strengthen all my leg muscles, I'm curious to see how my calves will react.
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August report

Postby twitchypoo on September 1st, 2004, 7:27 am

August was a fairly good month. Twitching has really slowed down, praise God! i did have a couple of days where it was really going crazy for a few moments. I get moments of crazy twitches and then it subsides. For a while they were so sparse i thought it may finally be ending, then my bum of all places went nuts! :oops:
As for fatigue, not super noticeable. My limbs fall asleep faster than they used to, Amy just like John Heffron said, espically when i use the hair dryer!!! :P By the way, i missed the first episode, what is going on?
Other than that, my family is awesome and my husband super supportive. he keeps me grounded.
Along with God and my family, i have got everything in the world to be thankful for.

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August report



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