EMG -- an enlightening story.

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EMG -- an enlightening story.

Postby ShakesTheClown on May 29th, 2004, 11:03 am

I'm new here, but have been in and out of the MGH/Cleveland Clinic forums since 2/99, when I began with profuse, body-wide fasciculations. Some of the most desperate posts you've ever read, and I'm sure most have you have scoured the far reaches of the Web to find them, are mine. Taken together, as I have collected my posts and emails to doctors and fellows alike, the corpus of blithering looks like the work of a madman.

That said, I had my fourth, right, as in 4, EMG at Yale's MDA clinic by the same leading neuromuscular specialist I have been torturing and pestering for the whole 5+ years. Guess what? I'm still fine.

I have read the survey here of everyone's symptomology, and to be honest, I would put myself at the worst end of the spectrum. In fact, one time several years ago, my doc brought residents in to see precisely what big-league fasciculations look like.

When I had the EMG the other day, just before the doctor came in to do it, I was sitting with two neuro residents talking about my history, electromyography, and all that jazz. Upon my finally taking a breath, one of the kids asked me if I were a doctor! I am not.

My point is this: all of what you want to believe about BFS -- the stuff we continually pound into each other's heads, is absolutely true. The medical literature does not lie, and neither do your doctors. Insidious MND's present to doctors the way a skunk presents at a picnic. It's really quite that simple.

My neurologist, by virtue of running the clinic for years, has seen hundreds of BFS cases, and as much ALS as anyone, as he will say. He reports, that he knows immediately upon examination when there is a worrisome pathology. He has never been wrong.

So, my parting point is this: my most recent exacerbation was awful; quite literally could not be worse on any count of the whole gamut of symptoms. I panicked; went throught the whole obsessive routine many of us go through -- made my life and those around me absolutely miserable. And to what end? To find that I still have the same old, pain-in-the-ass, BENIGN problem that nobody understands.

Take the test once, and be done with it. Buy your peace of mind, but let it really bring you peace. This annoying syndrome has cost me a wife, a career, my sanity, and so much more. Please listen to me.

Be well,

Sean
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Postby SusanSid on May 30th, 2004, 2:44 am

Sean,
Thank you for the post! I think I needed it, and am sure others do too.
Sue :)
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Great post

Postby Jayel on June 2nd, 2004, 1:59 pm

Sean-

You can never get enough of a post like yours. I can see how far I unreel if I allow it. Thank you for the reminder to hold the reigns and trust the doctors. I wish you continued peace.

Jayel
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Postby Swed on June 2nd, 2004, 2:26 pm

Great post and thanks for sharing!
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Postby danny killeen on June 6th, 2004, 4:48 pm

I totally relate, and thanks you for your sharing that with us.
I am a police officer and it is hard to be in this position of fear, when I spend my whole time being the " strong " one for others. Your post makes me feel strong enough to try to change my perspective.
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Postby kent1915 on June 7th, 2004, 12:13 pm

Danny- I hear you about admitting the fear. I have spent the last 10 years either investigating and treating abused and neglected children or getting involved when the kids are needing to go into alternate care or worse yet, when the children are killed. I have had enough violence to last a life time and have responded by stuffing my own emotions and responses deep inside to be "tough" for everyone else. What was it that the Bard said??? This above all to your ownself be true? You have to take care of the caretaker.

Isn't it interesting all the facets of garbage that BFS makes us deal with?

Peace.
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Thanks and question

Postby SLL on June 7th, 2004, 4:40 pm

Thanks - I needed this. i am like you. My neuro is the best of the best. He runs the MDA/ALS Center here in San Fran. I constantly have normal exams...i finally forced him into an EMG...10 pokes in he stoped the machine and said "this could not be more normal". He has looked me dead on and said "this is benign"...but of course, I am now convinced I have an elusive slow progressing from of Bulbar...quick question...will a limb EMG (in all your research) show abnormalities if something bulbar is happening?
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Thanks and question

Postby SLL on June 7th, 2004, 5:57 pm

Thanks - I needed this. i am like you. My neuro is the best of the best. He runs the MDA/ALS Center here in San Fran. I constantly have normal exams...i finally forced him into an EMG...10 pokes in he stoped the machine and said "this could not be more normal". He has looked me dead on and said "this is benign"...but of course, I am now convinced I have an elusive slow progressing from of Bulbar...quick question...will a limb EMG (in all your research) show abnormalities if something bulbar is happening?
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Postby Bradford on June 7th, 2004, 6:54 pm

Bulbar refers to the part of the nervous system that controls muscles of the tounge and swallowing for example. Anatomically, it is a different nerve root than something like the tibal nerve that supplies the lateral and medial head of the calves.

Its possilbe to have involvement in many areas, but bulbar involvement will not cause twitching in the calf muscle and visa verca. In a motor neuron disease, muscle fasciculations are specific to the area or limb where neuron/denervation is occuring.
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Postby SLL on June 7th, 2004, 9:38 pm

Thanks...so I twitch everywhere - if it were due to ALS, the EMG would have found something I would hope. Of course, he did not even find fasciculations on exam! I feel them to the point of them being almost painful.

I just am bummed he did not do bulbar muscles - I guess he did not feel the need. BUT now, of course, I have perceived swallowing issues, am a little hoarse...keep checking my tongue like 100 times a day for atrophy (like I know what I'd be looking for, anyway)...yeesh!

Well I have a call into him to ask him what he thinks.
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