Aa
A
A
Close
Avatar universal
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!
Discussion is closed
Cancel
2 Answers
Page 1 of 1
Avatar universal
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.
Discussion is closed
Cancel
Comment
Avatar universal
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!
Discussion is closed
Cancel
Comment
A
A
Doctor Ratings & Reviews
Comprehensive info on 720K doctors.
Complete reviews, ratings & more.
Undiagnosed Symptoms Community Resources
Top General Health Answerers
363281 tn?1353103243
Blank
Nelson, New Zealand
1756321 tn?1499064984
Blank
Queensland, Australia
19694731 tn?1482853437
Blank
AL
Avatar universal
Blank
80052 tn?1496327897
Blank
way off the beaten track!, BC
Avatar universal
Blank
CT