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Old 07-02-2012, 03:07 PM
anabanana anabanana is offline
Junior Member
 
Join Date: Jun 2012
Posts: 22
10 yr Member
anabanana anabanana is offline
Junior Member
 
Join Date: Jun 2012
Posts: 22
10 yr Member
Default Ne Here: Need PN testing Advice and Support

Hello Everyone who's been down this dark road!

I am 36 and for the past 2 years I have had muscle twitching (fasciculations) increasing as the time has gone by with increasing muscle weakness. I have also developed pain in feet over time as well as twitching in the feet accordingly (pressure induced) and random jabbing sensations, vibrations in feet/legs when on them (no diabetes). The only thing that slightly relieves my foot pain is thick soled, cushioned footwear, which for me screams NEUROPATHY. I have fluctuating breathing and dizziness/off balance issues too from the beginning.

I have had many general blood tests, brain/cerv mri and EMG/NCV at a ASL/neurology clinic, supposedly "normal" EMG/NCV. No answers so far...

They told me I have no motor neuron disease signs, and DRS were not very helpful nor interested in my condition/symptoms progressing. I am the driving force here...

I am here desperately trying to find some help from all of you who've been there, because with all my progressing symptoms, it is becoming clear to me that this is some kind of neuropathy, even if the neuro's don't see any neuropathy on electrodiagnostic studies.

-Can EMG/NCS not pick up on all types neuropathies (aside from small fiber)?
-Could serum neuronal antibody tests provide answers?
-Could Lumbar puncture provide great insight?

I am looking to find like minded people with personal experience and advice, as I am fighting this alone every step of the way and can't do it anymore, and need a lot of support.

I need advice on laboratories that provide these neuronal antibody tests: Athena vs Quest and how to go about getting a doctor to run these tests, with a negative EMG/NCV. Reading online, I know all too well that EMG/NCS are not the end-all for neuropathies. Anyone with insight into this, please contact me.

Thank you for reading and hope you can help me,
Ana
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