Twitching Away

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Twitching Away

Postby Anthony on September 2nd, 2003, 8:50 pm

Hello,
I am a neurlogist and I have been in practice for seven years. I have had many a patient unfortunately with ALS, but also some with other conditions like CIDP, MMN, and benign fasciculation syndrome. About one and a half years ago I noticed some atrophy in my hand and I was having some weird aching and burning in my left arm. Now the atrophy actually has been present for eight years, but is more noticeable now. It is an area on my APB muscle of my left hand. I still play the piano and even take lessons from a university professor. There is no weakness at all in my hand and no atrophy or reflex changes elsewhere.
But I have fasciculations everywhere and they worsen when I am tired or at night or anxious, usually when I am on call at the hospital. sometimes they awaken me from sleep. They occur in my legs, shoulders, side, thighs, face, and hands.
Being a neurologist who specializes in neuromuscular diseases, I've done many an EMG on myself. I always find a few fasciculations, if I look hard enough, but never any other signs of denervation. I've also seen a specialist in Indiana who has assured me the atrophy in my hand is nothing and I have Benign Fasciculation Syndrome.
But, it is driving me crazy! My father died at age 62 a few years ago. He left behind a lot of projects that he didn't have time to complete. I don't want to be like him! I've paid off my house early just "in case." I wish there was a way to be sure I don't have ALS or MMN or a strange slow motor neuron disease. I keep telling myself not to worry, but it is always in the back of my mind.
I've also noticed that if I work out at the gymn I have less fasciculations. Also neurontin seems to help as does a beer occassionaly.

Thanks for listening,
Anthony
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Postby marieclare on September 2nd, 2003, 9:41 pm

You sound so sad!! Don't the EMG's reassure you? Have you ever heard of anyone with a clean EMG who got ALS? You need to listen to the advice of so many people on this forum and get back to enjoying life--I know it is hard as I also have had BFS for 6 years --and i didn't have the luxury of testing myself with EMG's--i just had many doctors look at me like I was crazy when i described the symptoms--I hope they will go away some day--as does everyone else on this forum--Did you have side effects from the neurontin? how much does it help--i want to take it too. What dosage do you take? Good luck to you!!!
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Postby Jenn311 on September 2nd, 2003, 9:55 pm

Sorry to hear about your dad, Anthony. I bet that adds fuel to the fire for your own anxiety about dying. I was curious though....is it your left hand that is atrophied? Are you right-handed? Could it be that your hand has always been like that but you didn't notice until you went looking for it? Have you tried to tone it up with strength exercises? If so did they work? I can relate to the burning muscle feeling in your arm....I've gotten that same feeling before, and I've heard others here describe it as well.

I went to the neuro because my right calf was much smaller (almost 2 cm.) than my left. She measured it, thought it was odd, checked for weakness (of which I have none), and said that usually you see that in people that have hurt their back (but I hadn't....). She seemed unconcerned. Diagnosed me with BFS...didn't even bother with an EMG. She told me that if you can feel your twitches, it almost undoubtedly BFS.

I think being a neuro yourself, and seeing people with ALS, and realizing what an awful way it is to die feeds your fears quite a bit. Most of us here don't have to deal with that kind of situation, luckily! I would be a basket case if I did :wink: .

You know you are fine....if something develops in the future, deal with it then! Don't sit around waiting to die when you have so much living to do! Have you tried therapy? Or maybe anti-depressants? Maybe you would benefit from those things....help to ease your anxiety. I hope you stop worrying soon.

Take care, Jen
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Postby Arron on September 3rd, 2003, 1:27 am

Anthony, your post is valuable. We ALL understand what you are going through and the "doubt" you are experiencing. That is why a lot of people are here, sometimes for years.

I understand all too well your anxiety and feelings of "something" must be wrong, but what the heck is it? I am not a doctor BUT, I have about 8 or 9 good friends that are, and we all discuss this stuff regularly and try to find information and experiences on it. I have done a LOT of medical studying for BFS and many other subjects, having a wife with severe SLE for 20 years, so I'm pretty savvy when it comes to certain medical things. So far all we've come up with is the same thing you found out. It's there and something is causing it, but it's obviously benign, or so slow moving that we all end up dead and buried from old age before it ever manifests itself into anything serious.

Don't let this stuff get to you. Listen to what you would tell a patient if he had BFS and you were re-assuring him that he was OK and everything checked-out normal. I know it's hard to live by your own advice. I am one of the worst at that, trust me. I am strong on here for other's but I sit alone at night, wondering "when" my number will come-up. I also work alone, a lot, not because I have to, but because I choose to, because I just don;t feel like being around anyone. My life is still overtaken by this crap, just like everyone else. I twitch, jolt, ache, have fatigue, shake, tremor, have stiffness and about anything else related to BFS, Fibromyalgia and whatever other fancy names you want to call this weird syndrome, so I sympathize with you.

I'm not "here" 99% of the time. I spend time with my daughter or wife and can't remember what the heck we did that day because I wasn't "there". My mind was WAY off in the distance. DON'T do what I do. You KNOW it's benign and you have the means to prove it to yourself over and over again.

We ALL have natural size differences in our limbs, maybe you just have one spot on your hand that just isn't being exercised as much as the other hand? Or maybe it's just nothing at all. Maybe a slight case of carpel tunnel or some other localized nerve problem? My neighbor talked about his arm shribbling-up for two years when he had a nerve injury that he didn't even know about. He said his left arm got to be skin and bone for no apparent reason, until he had a back x-ray and the doc found some kind of spinal damage from a fall he had months before, which caused his arm to shrink for some reason. Anyway, he's back to normal now, after a few years. Maybe you have something similar and fairly benign going on that you don't know about?

Anyway, I KNOW how you feel. It's frustrating, depressiong and scary at times, even for veterans like myself. Sometimes it's better not to know, than to know about certain things. Hang in there man, I think you'll be just fine :-)
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Relax

Postby KERRI on September 3rd, 2003, 7:31 am

Deep down inside you know that it is all going to be okay, listen to that voice and tune out the devil on your shoulder telling you otherwise. I am trying to do this, and I know it is hard, but guess what, there is no answer for why our bodies are doing this to us, so instead of fighting it we need to learn how to live with it. I am the worst basket case on this forum, but as time goes on I believe that will change, if you have time on your side than you have something to be thankfull for. I have a friend who is a neurologist and a friend who specializes in pain management, they each do emgs, they have done so many on me and never found a fasciculation. I had one emg done by someone else and there was one localized fascic, but the when that limb was repeated 6 months later it was gone. I look at it this way, if the fascic went away then it is not costant, and I do believe ALS fascic do not stop until the limb is useless and the muscle are wasted. I am not a doctor and may be wrong about that I don't no for sure.

Another problem you are a doc, so you see this stuff way to much, that may be adding some anxiety which is fueling your symptoms. The smaller limb thing, my right leg has always been a little smaller than the left, but it has not changed in size since all of this started, so I do not pay any attention to it.


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Reply

Postby Anthony on September 5th, 2003, 5:42 am

Thanks for the support! It means alot to know other people are going through the same problems I've been dealing with this last one and a half years!

Anthony
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Postby Pole on September 5th, 2003, 6:01 am

Anthony
I can hardly believe that you are a neurologist who is seeing many PALS and you are afraid that you may have ALS. Don't you see any differences between you and these poor people?

regards
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i agree

Postby SCOTT on September 5th, 2003, 8:10 am

pole,

i was waiting for someone to ask the question of the dr. my neuro is a nerve and muscle disease specialist and sees als daily and would never worry about 1.5 years of twitches and no weakness being als. as a matter of fact he told me 5 months of twitching with no weakness that turned out to be als would be a reportable event for the textbooks on muscle disease.
and he in 20 years has seen 0 people with normal emgs (at the time they where twitching) turn out to have als EVER!! he said to me one emg is always enough when you are testing for muscle disease and twitching is already present because in muscle diseases twitching is last..the end of the disease process.


goog post, i doubt this person is a dr at all.

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Yee HAAAA

Postby KERRI on September 5th, 2003, 8:41 am

Scott,

I love ya man, where is your neuro from, mine are to chicken *beep* to say things like that.

Even my friend who is neuro, well he did say " if you have that I have to go back to med school "

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Postby fastpage on September 5th, 2003, 9:55 am

If this person is a neurologist, so am I.
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twitching

Postby SCOTT on September 5th, 2003, 11:43 am

my neuro is the head of nerve and muscle disease at the nerve and muscle center of texas located in houston texas . it is associated with baylor college of medicin. he is also a professor of neurology at baylor hospital. he told me from the first visit i had there was no als...he wanted to do a emg and 6 month follow up to check for possible nerve damage from disk issues but nothing more. 18 months now and still twitching no loss of muscle and no weakness at all and als is no longer even in my mind .
i think my cause came from severe anxiety over health. which i am silly to have because my health is exellent.


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Postby Arron on September 5th, 2003, 2:11 pm

Hey now, let's not be too hasty or harsh on someone we don't even know, such as Anthony. Maybe he is a neurologist and is just not good at self diagnosis / self confidence / and believing the HE has something benign.

How many times have YOU people been told by SEVERAL neuro's and after several EMG's that you do NOT have ALS, yet you keep believing otherwise? Can't a doctor (who is human) have the same fears with his own body?

Here's an example. I am always confident and supportive of other's. I know what I know and believe what I believe, but I too, doubt things and get scared when it comes to my own body. This is true for just about anything I do, (and I do many things in many different fields), where if someone came to me and said they had this problem (with just about anything) I take a positive side and help them through it. BUT, when the same issue involves ME, I take the dark side and always think the worst.

Can't Anthony be the same way? Is he really any different than any of you? The answer is no. So before you all go slamming someone, please be more compassionate and cautious about what you say towards other's.

We aren't here to "judge" people, we are here to help support people with REAL fears, be them doctors, mechanics, laborers, secrataries, cops, directors, engineers, government workers, state workers, or just couch potatos, we are ALL people with feelings and REAL fears and are ALL here seeking help and support. Anthony is no different and I have no reason to doubt whether is is or isn't a doctor / neuro. He's a person with the same feelings any of you have, and he is here seeking support for himself, not his patients, so let's keep things a little more happy, supportive and friendly towards other's, OK?
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Postby fastpage on September 5th, 2003, 2:44 pm

I am being neither hasty nor harsh. Anthony is entitled to all the support you can give him but I have good reasons for saying what I did. There is no reason to believe he is a neurologist and several to suspect he is not. If people accept his claim without skepticism then he gains unverifiable credibility as a neurologist which could cause many problems down the road for some members here. I stand by my comment. This is my opinion only. I sincerely wish Anthony, whatever his occupation, all the best.
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Postby Jenn311 on September 5th, 2003, 2:59 pm

What does it matter whether he is or isn't....I don't see any reason not to take what he says at face value. I agree with Arron...he has come here seeking support, like the rest of us. It is well known that doctors and others in the medical profession are esp. culpable of getting freaked out by the twitches and reading them as ominous.

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Postby garym on September 5th, 2003, 5:36 pm

I agree. Whether he is or isn't a doctor, we should all have compasion for him. His doubts and worries are very familiar to me. That being said, I will not automatically accept info. that he or anyone else gives about my condition as being the truth. That is why I'm so *beep* anxiety riddled :D !

Lets proceed, give support and see what only time will tell.

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