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mike88

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Jan 21, 2010
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Learn about ALS
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Utah
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Salt Lake City
Hey there! My name is Mike and I'm 31 years old. I've had fasciculations and weakness in my muscles for the past several years. I first noticed the weakness in my right hand when playing the piano and not being able to play with the speed or strength I'm used to. It has slowly progressed since that time and recently I've seen a neurologist. My CK levels are slightly elevated, my EMG results found atrophy in all 3 regions tested and 3 weeks ago I had a muscle biopsy done but have not yet received the results.

My fasciculations occur on a regular basis, day and night in random fashion to muscles all over my body. My atrophy is visually noticeable primarily on the upper right side of my body. I've lost strength in both my legs and especially my right upper body.

My neurologist suggested I study Myopathy's and specifically Myositis. After my research, the symptoms don't seem to fit, specifically fasciculations. I know ALS is rare and I'm hopeful I don't have it but I was hoping to get some thoughts on this from those of you who do. I appreciate your help in advance.
 
Hi Mike88--

I do not have ALS and have not been diagnosed with anything yet, but I am wondering why your neurologist suggested you study myositis. Are you supposed to be diagnosing yourself? Perhaps he should do the diagnosing?

that aside, are you seeing a neurologist specializing in ALS and other neuromuscular disorders at a well-regarded hospital? from what I have learned, these folks are the best at diagnosing these complex and rare illnesses, rather than a general neuro.

also, the EMG has specific findings that indicate the possibility of ALS. did the neuro say that you had findings consistent with ALS?

I hope they uncover the source of your problems soon and that it is something treatable. The PALS on here will probably chime in with some good advice.

Good luck--

Sandra
 
Mike, also an EMG does not "find" atrophy. An EMG measures electrical activities of nerves and muscles and "finds" things that are consistent or inconsistent with the electrical activity that is found normally. The things that the EMG "finds" can cause atrophy, but the EMG is more specific sometimes in indicating what process is going on, or not going on.

Knowledge is power - hope that helps.
 
I'm fascinated by your neuro telling you to study myopathies. Maybe he is trying to give you something to keep your mind occupied away from ALS.
 
You should know something definite from the results of the muscle biopsy.
If you want the best diagnosis look up the nearest ALS Clinic in your area and see a Doctor there that deals with ALS every day, not a general Neuro.
 
SandraD,

Thanks for your advice. After I get the muscle biopsy results back I will seek out the appropriate specialist and not a general neurologist. Great words of wisdom!


ktmj,

What I do know is that after my EMG was complete, my neurologist told me that he had "found" that my muscles in all three areas tested were atrophying and that he recommended a muscle biopsy to shed additional light on the issue.


Zaphoon,

I hope you're wrong. ;)


Capt. Al,

I could not agree more with you. Thanks for the helpful advice!
 
Hey Friends! Thank you so much for your input and advice. I wanted to let you know that I spoke with the nurse of my neurologist yesterday. She told me that he would like to see me in person to speak about what they had found on the muscle biopsy. I was able to get out of her that he had written on my chart that the findings were negative for a myopathy but positive for a neuropathy. The words, "chronic motor nerve disease" was written there.

Now I'm no medical expert but that sounds fairly close to "Motor Neuron Disease," to which I understand being the British term for ALS. I realize that there are many nerve diseases so I'm not too worried about ALS yet although the thought of the possibility is somewhat disturbing.

Can anyone give me a better idea of what the other nerve diseases are that mimic ALS? I know about MMN and have been researching it a little but I can't tell what the big differences are in symptoms and diagnosis.

Thanks in advance!

Mike
 
Mike, take hope that there is a big difference between nerve disease and motor neuron disease. Some diseases attack only the nerves by demyelinating the nerve, or some other process. There are quite a few.

Just for giggles take a look at CIDP - it most times does not have sensory issues. I'm not saying that's what it is - just showing you that there are nerve diseases that are not necessarily neuron diseases (and are treatable). Hold onto that until your appt.

Good luck.

p.s. When is your appt?
 
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