Any old time-twitchers had these symptoms?

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Any old time-twitchers had these symptoms?

Postby Stephen on June 7th, 2004, 10:36 am

Hi all: I'm a 35-year-old male with profuse fasciculations. I've had them for nine months now. They started in my calves and feet, but worked their way through my body. I have them everywhere now; the tongue is about the only place I haven't felt them. They're very sporadic in my upper body -- not all the time -- but fairly constant in my calves and feet, so that I barely even notice them there now. Most worrisome, somehow, is my neck, where I have a lot of them, off and on, and swallowing seems, not problematic, exactly, but sometimes more effortful. Maybe I'm just hyperaware. I can still take a two-mile jog without problems, but when I'm resting if I point my foot my foot or flex my calves forcefully, I get cramps. I have three kids, one a special needs kid. Loads of stress. Wife works long hours, and I took a leave of absence from a scholarship to grad school because felt I was going to split in two. My maternal grandmother died of ALS at age 75; my mother is approaching 70 and healthy, but I feel like I've beel living under the guillotine of ALS for nine months now, although I've been more successful in last couple months using mental models to live more in the present (Buddha or Hector, depending on my mood). I've had two rounds with the motor neuro folks. First showed slightly brisk reflexes on right side, with EMG that did not indicate ALS ("at that time" as my preeminent motor neurologist was careful to say) and the second, three months ago, just a physical, showed normal strength and therefore EMG not recommended. I'm going again in July. I still feel strong -- forty pushups, or 40lb arm curls with one hand, 10 dead-hang chinups, no problem. Yet the fascics, cramps, and sometimes stiffness worry me.
I've visited this site a number of times, kind of wondering if BFS is my savior diagnosis, or a psychological rest stop on the highway to hell. Finally I decided to register. It's a weird situation. Sometimes I feel like I'm on a beach, buried up to my neck in cement-like sand. Everyone around me is having a barbecue. I'm quite preoccupied as to whether the tide is going in or out, but since my friends on the beach can't undig me, they just say, Dude, don't worry about, just have a beer. Well, Ok, but... And I am. I've learned to live with it, but still... you have the moments when you want an answer.
So a lot of you have been here.
My Question: any of you old-time twitchers who've been through the several-year time frame and can safely exclude an ALS diagnosis have cramp/profuse fasciculation symptoms similar to mine? Anyone have words of encouragement for me? I'd love to hear them.
Take care.
Stephen
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Postby SLL on June 7th, 2004, 1:59 pm

I am new and just posted, too. see my "EMG experiences" post...I have been twitching for 5 years. Have been to the neuro every year and had normal exams each year and just NOW went and got an EMG. BUT here is what happens with this thing that I think lots others will attest - there are days, even months, or years that you put it to rest, out of mind and are fine...and then like a ton of bricks, one day it all comes back to you and frightens you again. Even when rationally it makes no sense.
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Spend some more time on this site.

Postby RexM on June 7th, 2004, 4:38 pm

Spend some more time on this site, and go through the archives. Profuse twitching and cramps without weakness certainly aren't any indication of ALS. Your symptoms are typical of BFS and nothing else.

Sounds like you have more of a problem with Anxiety than you may realize, and as I can tell you from personal experience, anxiety jacks up the BFS symptoms BIG time.
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Postby Bradford on June 7th, 2004, 11:27 pm

Steven,

Some of the more expereinced old timers here turned me on to some of the recent research that has been going on. Basically, this stuff has been called by different names since the 1940's

BFS is the modern day term for Qantal Squander, Neuromyotonia,
Isaac's Syndrome and PNH (peripheral nerve hyperexcitablity). I like to say that BFS is the "politically" correct term because we patients like to hear words like benign, but the "clinically" correct term neuromyotonia has our symptoms falling into the differential of Isaac's Syndrome and would be conisdered a mild variant.

What causes it? Recent research has indentified an anitbody responsible for changing the cell mebrane voltage potential that regulates the potassium ion in the cells of the peripheral nerves. When the immune system attacks normal healthy cells by mistake, it is considered an autoimmune response. All the symptoms that you read about on this forum have been indentified in Isaac's and the variants that range from very mild to extreme classic Isaac's Syndrome.

A lot of people can't see past ALS thus they never latch onto anything that really has "teeth" from a clinical perpective. Currently, there is nothing that can be done except treat symptoms because it is an autoimmune disorder with root in altered genes.

As a matter of fact there is tons of reasearch on this, but most of it is
on a pay-per -article basis from some sites that cater to more of the medical and scientific community. The point is that BFS is nothing new.
While its very annoying and messes with your mental state, its benign!
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Similar experiences

Postby DCGuy on June 9th, 2004, 6:12 am

Based on everything I've learned about ALS, nine months of fasciculations with no less of strength, after a normal EMG, are excellent signs that there is no illness. I've been going on one year...and still can do about a dozen pull-ups also. BFS is often associated with cramps also.

The swallowing thing is probably mental. A lot of posters have gone through it (myself included)...it's very easy to psych yourself out and get hyper-aware of any movement or effort. There's even a medical term for the psychological inability to swallow, but I cannot remember it right now.

I started feeling a lot better once I decided "hey, maybe those neurologists with an M.D. really DO know more than a guy who has surfed the Internet for a few hours and is freaked out." My neurologist said that more people died in Israel from heart attacks in the Gulf War during air raid sirens than from actual scud missiles launched from Iraq. So he told me: don't make yourself sick if you're not!
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Postby jcavan4125 on June 9th, 2004, 4:34 pm

People with ALS do not run two miles, do push-ups, chin-ups and one arm 40 lb. curls. I know where you are coming from, I've been there! So has almost everyone on this board! Remember the hallmark of ALS is WEAKNESS not twitching!!! Try to relax, your anxiety is causing you more problems than your actual symptoms are. Good Luck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby ArronToo on June 25th, 2004, 12:23 pm

Stephen,
We sound exactly in the same boat! Only difference is I also have two and a half year old twin boys adding to my stress level.
The only weakness is when I do paranoid things like strength-testing, trying to chin-ups like I could in my 20's (I'm 50-odd pounds heavier now - gee, you think my arms are going to be sore the next day?)
The worst thing is that I've been like a bear around the house, the worring is really starting to get to me.
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Postby amy_twitch on June 29th, 2004, 12:25 pm

Hi Stephen,
I'm right with you on the nine month time frame. I totally agree with your beach analogy...and I truly think that whether or not it's related to BFS, everyone on this board suffers to some degree from Generalized Anxiety Disorder....we all have had the physical symptoms to prove it.

I wish to holy heck we could figure out what causes this thing. The post-viral syndrom, as well as auto-immuninty issues, all make sense to me. I have a postive blood ANA test (common in lupus and other autoimmune diseases), but I've seen a rheumatologist and have had all 'typically clinical' autoimmune diseases ruled out thus far. So I have to wonder, 'there's definitely autoimmune activity going on in my body....exactly where and why is beyond me, and my docs too for that matter.' No one wants to delve deeper because as they all tell me, I look perfectly healthy.

It's very frustrating, isn't it? Physically, I feel like something is defintely going wrong in my body---NOT that stress and anxiety are to blame for all this damage. I can be having the most stress-free, happy day of my life, and I will still twitch and feel overly fatigued. Plus the patterns of the twitching are so strange (mine are very similar to yours---started from the feet and worked on up). It's hard to imagine stress and anxiety being choosy and deciding to wreak havoc on such specific muscles at differing times.

Take heart, and keep the faith that this IS benign and, physically, there could be far worse things happening to all of us on this board. This board will help you greatly with set-backs in your mind-set. I'll look forward to seeing your follow-up post after your next neuro appt in July. If it will ease your mind, insist on further testing. Or if you're happy with the physical once-over judgement, power to you. You mentioned your maternal grandmother died of ALS, which of course, adds some weighted stress to your situation---that said, however, make sure your neuro addresses the odds (still extremely extremely small) that you'd inherit it. I imagine the neuro who told you that you didn't have ALS "at that time" was keeping your family history in mind....(though I'm certainly no neurologist, I'd do the same thing in his shoes when presented with someone who has a specific family history)---however, he should have emphasized that the odds are you WON'T get it....family history or not.

You know, being 30 and worrying that I might have ALS, has been a doozy of an experience for me too....I have a great marriage and two young children. I've even thought to myself 'heck, I'll take the *beep* ALS...just give it to me when I'm an old lady--not now!'. I think that's the worst part of BFS--it's hitting us all in the prime of our lives, when all we want to do is raise our children and be there for our loved ones. It's giving us a 'glimpse' of what it 'might' be like to become terminally ill at this stage of our lives---at it's scary as heck. All this havoc, from a benign condition...it floors me! We just have to figure out how to beat it at it's game and ensure we enjoy our lives every day (and not suffer from underlying fear). Makes me feel like an idiot at times, because there are many many people in our stage of life who ARE suffering from terminal illnesses (be it cancer or whatever)...and here we are 'worrying' that we 'might' be coming down with ALS or other motor neuron diseases. We can't help it---it's actually pretty vicious....we just have to figure out how to get beyond it. The VERY common thread on this board--we're all worriers!

Thanks for sharing your story. I hope this board can finally get to a point where we stop wasting our time thinking about ALS (easier said than done for all of us)...and instead put a collective effort toward figuring out what causes BFS. I know there are some people on here that are very dedicated to such an effort.

Welcome, and while it stinks all the same, I'm happy to hear that yet another person out there knows exactly what I'm going through.

Amy
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Long-lived BFS

Postby Oswy on August 19th, 2004, 8:24 am

Stephen,

"My Question: any of you old-time twitchers who've been through the several-year time frame and can safely exclude an ALS diagnosis have cramp/profuse fasciculation symptoms similar to mine? Anyone have words of encouragement for me?"


My symptoms developed around my 21st birthday and I'm now 37.

In retrospect, by my late 20s the fasciculations had "plateaued", albeit at what feels like quite a high level. My calfs permanently buzz and twitch, my eyelids and the muscles around my eyes do so with brief periods of remission, but if I blink or splash my face, for example, they have a good chance of going into overdrive for 10 seconds or so! I do get twitching in the neck and scalp, but this is in the occasional category for me.

I went through a long phase (which seems to have receeded) of several years when one of my calfs would suddenly cramp up into a knot, usually when I was in bed and in the middle of the night - these episodes would make my eyes water the cramp was so intense. I haven't experienced this for a while now however. Hey, it's not all bad news, lol

Oswy.
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Postby Stephanie on August 19th, 2004, 12:45 pm

My neuro's all said that cramps are very common in bfs. Amy-you are so right! I'm doing much better mentally and can't even recognize who I was when I thought I was going to die. I still "fall off the wagon" but not as hard.
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The Seven-Year Twitch

Postby LoraZee on August 20th, 2004, 10:18 am

I wish this site had existed in 1997. The only info available to me then was the Mayo Clinic Folow-up study. My neurologist was so cautious he wouldn't even give my disorder the correct name until a year had passed!
I was on "MS watch" for 5 years, due to a positive(?) brain MRI.
Perhaps he was careful due to my medical history. I was treated with chemo and radiation for Bone Lymphoma in 1987, at the age of 33. After 10 healthy years my general health took a series of hits. Several, like premature menopause, hypothyroidism, and undifferentiated auto-immune arthritis, have been blamed on the chemo.
What about the BFS? I remember a severe cold several weeks prior to noticing the first calf twitches. I also had a flu shot while recovering from this cold. Bad timing? I think flu shots are life savers and don't want to blame that alone.
The twitching started in my calves, then feet, and in a few weeks was generalized. My family doctor was on Christmas vacation and the old guy I saw in his place had the nerve to mention ALS to me at the initial visit. Thanks a lot! In tears, I ended up calling my own doctor at home, who called in a script for Klonopin. I have never been off it since. At first I required 2 mg. b.i.d. but have now stabilized at .5 mg in the am and 1 mg at night, when symptoms are worse. I am sure I am physically addicted but I don't care . I could not work forty hours a week on my feet, take care of my home, husband and 11 year old son without this drug. I consider it as necessary to my well-being as my thyroid meds.
In seven years I have seen no change in my symptoms. When I am at rest and thinking about it, I can feel a minor twitch somewhere-anywhere- in my body every few seconds. While sitting in a bathtub, the calf twitches are powerful enough to cause little ripples in the water. Almost amusing.
I guess I am lucky in that I do not have an intolerance to exercise. I am 50 years old now and work out regularly. I notice an increase in symptoms right after exercising but have learned long ago to ignore them. As a cancer survivor, and finally giving birth at age 39 to a baby the doctors told me I would never have, BFS is simply a fact of life.
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