Undiagnosed Symptoms Community
Muscle weakness and no diagnosis
About This Community:

This patient support community is for discussions relating to undiagnosed symptoms, breathing difficulties, feeling cold, cough, diarrhea, dizziness, fainting, fever, indigestion, itching, nausea, numbness, pain (chronic), paralysis, rash, sweating, swelling, urination problems, and vomiting.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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!
Related Discussions
-7 Comments
Blank
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.
Blank
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!
Continue discussion Blank
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Undiagnosed Symptoms Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top General Health Answerers
1756321_tn?1377771734
Blank
Red_Star
Queensland, Australia
Avatar_f_tn
Blank
mkh9
CA
4851940_tn?1385441629
Blank
jemma116
United Kingdom
1530171_tn?1418143903
Blank
TheLightSeeker
London, ON
363281_tn?1353103243
Blank
SassyLassie
Hanmer Springs, New Zealand
1780921_tn?1416842066
Blank
flipper336
Chandler, AZ