Enjoy Vacation & Travels--It's OK to Twitch!
- Thread starter Alonzo
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atygrabelle
Member
vacation I wish. . . but I will try to make the best of my time. One Mai Tai going down
atygrabelle
Member
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. . .
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. . .
owingDuckWhistler777
Well-known member
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$$.
Nothing in your story remotely fits with als - just concentrate on that rather than focussing on one small inconclusive blip.
David
Your neuro would not say you did not have als if he had the slightest doubt - he would want to cover his a$$.
Nothing in your story remotely fits with als - just concentrate on that rather than focussing on one small inconclusive blip.
David
JCVanilla4125
Well-known member
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!!!
Two years with no progression of symptoms and normal physical exam and at least one normal EMG= no ALS!!! RELAX!!!
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
GinniferLynne
Well-known member
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....."
Ginny
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....."
Ginny
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.
AveryzAveriezA
Well-known member
StephG22 and Ginny,
Exactly my current plan! I do twitch almost constantly as everyone on this forum knows by now, but when I don't look or concentrate on the feeling of the twitches -- this action is better than Klonopin. I believe this is the answer to my BFS; to learn to live with it and not focus on it and then the days are so much easier.
Footnote to Steph, you seem so much more happy and your posts are more up beat since your current appointment with that wonderful doctor. I'm glad his reassurance did so much for your peace of mind although I know we all need this forum from time to time too.
Ava
Exactly my current plan! I do twitch almost constantly as everyone on this forum knows by now, but when I don't look or concentrate on the feeling of the twitches -- this action is better than Klonopin. I believe this is the answer to my BFS; to learn to live with it and not focus on it and then the days are so much easier.
Footnote to Steph, you seem so much more happy and your posts are more up beat since your current appointment with that wonderful doctor. I'm glad his reassurance did so much for your peace of mind although I know we all need this forum from time to time too.
Ava
GinniferLynne
Well-known member
I second that again, StephG22.
I feel like I have a whole host of new friends.
)
I feel like I have a whole host of new friends.
)usysparawl
Well-known member
Hey,
To the original poster. I can make the outer part of my right hand twitch by flexing it. I got freaked out about this until I asked my husband to do it one night, and his twitched as well. I also had a thumb/pointer finger twitch that lasted for three days. The hand twitches are the scariest.
I am not sure why folks are still worried after one or two years. With the exception of some very rare cases, most ALS patients develop weakness before twitching, and a few more develop it within three to six months.
And don't fixate on old studies that aren't even completely reliable. We are talking about a couple of people out of thousands here!
Peg
To the original poster. I can make the outer part of my right hand twitch by flexing it. I got freaked out about this until I asked my husband to do it one night, and his twitched as well. I also had a thumb/pointer finger twitch that lasted for three days. The hand twitches are the scariest.
I am not sure why folks are still worried after one or two years. With the exception of some very rare cases, most ALS patients develop weakness before twitching, and a few more develop it within three to six months.
And don't fixate on old studies that aren't even completely reliable. We are talking about a couple of people out of thousands here!
Peg
atygrabelle
Member
THanks. .
2 years and you think I could get it through my Mind right?
well if you go 2 years then you get an EMG that shows fibs/swaves in one muscle. . .and large motor unit potential (10%) in another then you get scared. (even though rest of about 7 muscles from back, to arm, to leg, where fine) . . .and I know that everything else was a-okay recruitment, interface pattern, even NO FASICS on the *beep* exam. . plus normal reflexes after 2 years.
You start reading the braintalk mayo study and you see the end where it mentions motor unit potentials. . .
I know that motor unit potentials show some old dammage and unless it is polyphasic with Fibs/swaves I shouldn't be too concerned. . .but I can't help it
and I know that fibs in one muscle can happen easily. . .stretched muscle, twisted neck, who knows. . .the doc says "next time they probally will be gone".
But Now I wake up really early (5am) and I keep thinking of the Neuro saying "I'm optimstic" and I keep turning that over in my mind. It freaks me out to no end. even though my EMG says "patient concerned about als, there were no signs indidantive of ALS or neuropathy present".
Optimistic
So i walk around after 2 years with my 3-6month anxkiety back in my head.
2 years and you think I could get it through my Mind right?
well if you go 2 years then you get an EMG that shows fibs/swaves in one muscle. . .and large motor unit potential (10%) in another then you get scared. (even though rest of about 7 muscles from back, to arm, to leg, where fine) . . .and I know that everything else was a-okay recruitment, interface pattern, even NO FASICS on the *beep* exam. . plus normal reflexes after 2 years.
You start reading the braintalk mayo study and you see the end where it mentions motor unit potentials. . .
I know that motor unit potentials show some old dammage and unless it is polyphasic with Fibs/swaves I shouldn't be too concerned. . .but I can't help it
and I know that fibs in one muscle can happen easily. . .stretched muscle, twisted neck, who knows. . .the doc says "next time they probally will be gone".
But Now I wake up really early (5am) and I keep thinking of the Neuro saying "I'm optimstic" and I keep turning that over in my mind. It freaks me out to no end. even though my EMG says "patient concerned about als, there were no signs indidantive of ALS or neuropathy present".
Optimistic
So i walk around after 2 years with my 3-6month anxkiety back in my head.