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Old 08-13-2012, 04:40 AM   #1
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Percussion Myotonia

Hello all, I am currently undiagnosed, just passed my 1 year mark when my symptoms really became very noticable. My symptoms became noticable shortly after I had my son (I was 30 at the time), just felt weak all over- kept writing it off as me being a Mom of two kids under 2 and working full time.. but as time went on, it proved to be something more serious.... I have seen many neuros, had three EMG's as I had a dr suspect ALS initially (all the EMG's are negative). I have diffuse muscle wasting, ptosis of both eyes/eyebrows, and swallowing difficulties with mild speech differences only when tired.
My worst weakness is my hips and shoulders, but I do have wasting in my hands- with mild thumb stiffness.

My question is- during all my many neuro exams, when the dr's would tap on my thumb muscle (thenar) it would have myotonia.. is this seen in anything else other than Myotonic dystrophies?? When I sneeze- my eyes get stuck shut just for long enough that I notice, and think to myself- well that was wierd!!

I still fear MND/ALS, but know that with three clean EMGs and many neuros saying its defintely not that I should put it out of my mind.. I also have had tachycardia and GI symptoms since this all began!
Any thoughts/opinions ideas are greatly appreciated, as I am quite a mystery, which makes it difficult when planning for the future!

 
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Old 07-09-2013, 03:07 PM   #2
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Re: Percussion Myotonia

Quote:
Originally Posted by bny806 View Post
Hello all, I am currently undiagnosed, just passed my 1 year mark when my symptoms really became very noticable. My symptoms became noticable shortly after I had my son (I was 30 at the time), just felt weak all over- kept writing it off as me being a Mom of two kids under 2 and working full time.. but as time went on, it proved to be something more serious.... I have seen many neuros, had three EMG's as I had a dr suspect ALS initially (all the EMG's are negative). I have diffuse muscle wasting, ptosis of both eyes/eyebrows, and swallowing difficulties with mild speech differences only when tired.
My worst weakness is my hips and shoulders, but I do have wasting in my hands- with mild thumb stiffness.

My question is- during all my many neuro exams, when the dr's would tap on my thumb muscle (thenar) it would have myotonia.. is this seen in anything else other than Myotonic dystrophies?? When I sneeze- my eyes get stuck shut just for long enough that I notice, and think to myself- well that was wierd!!

I still fear MND/ALS, but know that with three clean EMGs and many neuros saying its defintely not that I should put it out of my mind.. I also have had tachycardia and GI symptoms since this all began!
Any thoughts/opinions ideas are greatly appreciated, as I am quite a mystery, which makes it difficult when planning for the future!
How are you doing now? I can relate 100 percent. What test confirmed your MD2? I have a "mild percussion myotonia" and fatigue.

 
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Old 10-08-2013, 10:30 AM   #3
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Re: Percussion Myotonia

I undiagnosed also my problems started in the fifth grade, I am now almost 26 years old. As for your symptoms I do not experience anything along those lines. But just wanted to let you know you're not alone.

 
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