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Muscle weakness and no diagnosis
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Muscle weakness and no diagnosis

I was originally diagnosed with ALS, but now no one seems to know what is wrong.  I have had muscle weakness for over 8 years, and use a wheelchair all the time.  I cannot swallow, and have a feeding tube.  My medications for the muscle problems were discontinued by the neuro I saw when we moved recently.  Now I am having increased muscle pain and pseudobulbar affect problems. My face feels like I have a hair tickling it, almost constantly, mostly on the right side.  And the right side of my body is weaker than the left.  I have a clenched jaw, and use botox shots into the masseter muscles for relief.  
I don't know what to do.  An EMG showed no neuro/muscle problem.  Blood tests don't show the root cause.  I am scheduled for an MRI of the head and neck.  
Could it be Lyme?  Hypothyroid? MS?  How do I know even what kind of doctor to see?  Someone please point me in the right direction!
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-7 Comments
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Avatar_f_tn
Check out:
http://www.cidpusa.org/
and see if this describes what you have experienced. It says that many people are initially misdiagnosed with ALS.
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Avatar_n_tn
Thanx...I don't know if it me, because my EMG was normal.  Neuro doc said that I don't have neuropathy.  I will look into it, tho.  Thanx again!
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