Chris's story

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Chris's story

Postby graberc on June 30th, 2003, 6:08 pm

Work out 4 times a week. 255lbs 28 years old (just turned 29)

July 2002. It was toward the evening I noticed my left thumb was twitching. It would pull kind of down and in. Odd. . .but I didn't think much of it.

At the begin of August I was sitting in the Tibetian Restaurant in Bloomington Indiana having dinner with my Fiancee, and my parents. The twitching was still bothering me, I was thinking of seeing a doctor, and I mentioned it to my parents. We talked a little bit about my GrandFather who died of ALS and my dead said "well I thought he had the genetic kind, you have to ask your aunt ( A DR.)

My heart beat fast. . .the idea of ALS. . .my God. I went home and slept. That next morning before my mom, my fiancee, or my father woke up I took to the internet and searched for ALS + twitch

I freaked out. . . I was sure it was als. A week later I had dinner with my aunt and showed her my thumb. I showed her how I could trigger the twitch by gripping something real hard. . she said don't do that. She said it wasn't ALS, it's probally just a carpal tunnel or something. .

I wasn't happy. I rushed to a DR. who looked at it and immediatley sent me to a Neuro. I wasn't sleeping by then. Twitches had started to appear on my calfes, and randomly around. I get little "dents" or sometimes big twitches. Sometimes I get a bunch, sometimes not.

Oh, and I thought I was dying. Work suffered, life suffered. . .

The Neuro dismissed it as nothing. He did some tests and assured me it wasn't anything. I pressured for an EMG and got one (at one month in).

The Neuro did just my left arm/thumb (nerves). Found nothing, everything perfect, not even a fasciallation. At 1 month (or so) my left thumb had almost quit twitching. . .

Twitching elsewhere I noticed. . .and I staid freaked out. Finally my doctor put me on some drugs. . .to help. I took those for a little while. . .and felt a little better. He tested, again, strength, reflex, etc.

Asked for and got another Neuro. He was very through. Asked for Information on My grandfather and the EMG.
I saw him one more time in january I believe. After seeing him he told me he thought I have BFS. By then my "anti-depress" drugs ran out and I quit. Told me if I wanted to every reschedule I could, but he saw no reason to see me again.

When I ran out though, I was like . . .no this is to much. . .and stopped taking the drugs.

Still, as far as I can tell, nothing has changed. I get random twitches after exercising. I am pretty sure I am the same strength. . though I gained weight/got married and have lost a little bit of time on the stairmaster.

Weight lifting is the same/increased. I just hope I'm not "kidding myself" and there is some weakness there.

Lately I've noticed that if I take my index finger and push my thumb up against it. As if your thumb is lifting something. I see a "line dent" that goes to the meaty part (stops) to the base of the thumb. Not as visible on the left. . .That has freaked me out latley.

Still scared, but i'm doing okay.

Scariest. My grandfather. Though my aunt who is a dr. thinks he "didn't" have als (some dr reasons of why). . .And I do know he painted with lead paint every summer. Plus whats the chance it would skip my (now almost 62) dad. . .

Best. 3 weeks ago my right palm was twitching/pulling down on my right thumb this time. I went into the bathroom and thought I was breaking down. Going all the way back to last summer state. I just sit there and kind of. . .I feel a little silly for saying this. . .prayed. It stopped, after 4 days it stopped. . .and hasn't started since.
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HI I HAVE THE SAME EXACT THINGS

Postby KERRI on June 30th, 2003, 7:45 pm

I just recently turned 29 on June 20th, I also have been twitching for a little over a year, and i still get freaked out.


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Postby Arron on July 2nd, 2003, 12:09 am

graberc buddy, hang in there man! I went through the exact same thing. Check out My story under "Arron's story" and you'll see that my fingers started twitching the same way.


So far, what you have described sounds exactly like typical BFS and not ALS. I would trust your neuro. Maybe your aunt is right. Maybe your grand dad din;t actually have ALS, but rather some kind of lead poinoning or some other kind of neuro muscular disease or something?

Anyway, hang in there. If the meds helped you cope, take them! They are given to you for a reason. It doesn't mean you have to rely on them every day (unless you need it everyday). I still take meds for my anxious moments from time to time and have been for about 25 years. If they help you "cope" and feel better, don;t be afraid to take one every now and then. It doesn't mean you have to become a druggie or a zombie. Just adjust the meds so that they work without making you feel drowzy.

I still get the weird finger pulls every now and then, and to this date, my fingers always wiggle or are doing some kind of movement, but not like Parkinson's or anything, which is a constant tremor with a tell-tale "rolling footbal" type of movement.

Anyway, Try to buy some time and after a few months, if you are still freaked out about all of it, go get another EMG and that should ease your mind even more. If the neuro stuck you right in the place where you were having the problems (like your thumb) and it came-up normal, then as the science community generally agrees on, it is about as definitave as you can get that you do not have ALS :-) But if one more test makes you feel better, get one at like 6 or 9 months to totally put your mind at ease and then move-on with your kife :-)

Do NOT let this stuff ruin your life. You are young and you have better thing to do than sitting in a bathroom praying that you are OK. And it isn't stupid. I've been there myself more than once, and I'm not even religious :shock:
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1 year already

Postby graberc on July 2nd, 2003, 8:14 am

I'm hitting one year. . .

Which makes ALS pretty remote. . .but hey, who ever said the heart was reasonable.


July is pretty busy for me ( Week in Paris, 2 weeks in Puerto Rico) so hopefully when it's done I'll calm down. Though being away from the wife will be tough.
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Postby Arron on July 2nd, 2003, 12:39 pm

graber, go have fun! Enjoy your vacation and travels. It's OK to twitch. It doesn't mean anything "bad" is going-on, OK? And have a Mai Tai for me while you're in Puerto Rico with some good Puerto Rican rum! :)
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Postby graberc on July 2nd, 2003, 1:20 pm

vacation I wish. . . but I will try to make the best of my time. One Mai Tai going down
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Postby Arron on July 2nd, 2003, 6:38 pm

One, little two, little three little Mai Tai's,
gone are the twitches, and to them I say Bye-Bye... :lol:
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walked

Postby graberc on July 17th, 2003, 11:38 am

Walked from La Opera, to Plaza concorde, to the lourve, nortre dame, lunch, then eifle tower (*beep* tour de france was everywhere), then to Arc De Trimuph.

Oh, I walked up the stairs of the eiffle tower. . .


How far is that? I don't know. . .pretty darn far. I would say it's more then a mile from louve to the eiffle, and a couple from eiffle to the arc de trumph.

I loved France, and reports of their rudeness are exagereated! They are just like new yorkers, except they speak better english.


Kidding kidding new yorkers, I love your city as well.
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Postby Jenn311 on July 17th, 2003, 3:00 pm

Ah oui....

La Belle France! Glad to hear you had a good time.
8) Jen
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Another Freakout

Postby graberc on August 6th, 2004, 8:56 am

2 year mark. . .

no weakness

i'm going to school and so decided to follow up with the Neuro. he scheduled some bloodwork and another EMG, MRI. Reflexes normal


So I got really freaked out . . when the first emg needle went in. I had signs of denervation (mild to moderate fibs / s waves) in a neck muscle.

I about lost it right there. . .

He did the rest of the body and everything is normal. The only other thing was there was a "in doubt" reading of large moter unit in my left leg. The report said it suggestide some old injury. . .but it was so weak that it was in doubt.

Well the EMG Doc tried to reassure me. . that he saw no signs of als on the EMG. One muscle showing a little fib just means a pinched nerve, or a pulled muscle or something. . .it was so mild, he said, the next time we do an emg it would probally be gone.

Still that didn't help me much.

I then saw the doctor and he reviewed the entire thing (he has been doing this for ever). he told me how this was a medical student issue (BFS) and that he has seen it many times. He said nothing on the EMG concerns him and was more concerned about my mental well being.

The MRI was clean too. . .

I just hate having a slightly abnormal emg. . .I thought I was past this. I've been dealing with this twitching for about 2 years. . and I swear it was getting better before this emg.

Funny thing. . .no fasic ever showed up on the EMG, and everything else was normal (recruitment, etc)

*beep* I hate this. . .
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Postby dwl on August 6th, 2004, 9:05 am

Have you read "The House of God" by Samuel Shem? It's a book about interns - nothing to do with religion despite the title. This book cynically says that a normal patient is one who has been inadequately investigated. There's an old saying "the more you look the more you'll find". Medicine is littered with people who have had mildly abnormal results of absolutely no significance.

Your neuro would not say you did not have als if he had the slightest doubt - he would want to cover his a$$.

Nothing in your story remotely fits with als - just concentrate on that rather than focussing on one small inconclusive blip.

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Postby jcavan4125 on August 6th, 2004, 9:09 am

One of the problems with doing a test multiple times or even multiple tests one time, is that you will have false positives. It is simply the nature of the beast. What makes matters worse is that the less likely a particular population has the specific condition you are testing for, the greater the false positive rate will be. For example you will have a much higher rate of false positive HIV tests in all Catholic nuns in the U.S. than you will in the general population of Ethiopia for example.

Two years with no progression of symptoms and normal physical exam and at least one normal EMG= no ALS!!! RELAX!!!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Stephanie on August 6th, 2004, 10:07 am

Fasics showed up on both my emg's. When I had the first one done the dr asked me if I had neuromuscular diseases in my family because that nerve was borderline. I felt like I was handed a death sentence. That was a little over a year ago and nothing has changed since then. An abnormal emg can mean a lot of things like an injury or something
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Postby Ginlyn on August 8th, 2004, 3:01 am

dwl,

Haven't read that book, but I've heard of it.

I had a doctor years ago say basically the same thing, He said "If you keep looking hard enough, you will find something, but that something is probably nothing....."


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Postby Stephanie on August 8th, 2004, 2:28 pm

Most of us fall into that trap of looking too hard for possible symptoms. Me especially. My new rules are: no looking at my tongue in magnifying mirrors, no comparing limbs or muscles, look away when I twitch, no looking at negative web sites, no strength tests unless I am working out & NO MORE LOOKING FOR THINGS/SYMPTOMS THAT I DO NOT WANT TO FIND.
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