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-   -   Neuronal Antibody testing-any experience or opinion (https://www.neurotalk.org/peripheral-neuropathy/172556-neuronal-antibody-testing-experience-opinion.html)

anabanana 07-02-2012 06:09 PM

Neuronal Antibody testing-any experience or opinion
 
Hello,

I am considering peripheral neuropathy antibody testing.

Tell me about your experiences, did it help you get a diagnosis?

Any advice about this type of testing, from which lab (athena, quest) you tested at to the tests that are most useful in antibody testing?

My financial situation is sensitive, so I want to put my funds into what would count most.

Thanks!

glenntaj 07-03-2012 06:05 AM

Athena or Quest does have teh ability to do it--
 
--as does Specialty Lab of Van Nuys, California. There are probably other labs that do these now as well.

The most important antibodies to test for, I think, are the ones associated with neoplastic syndromes--the Hu, Yo, and Ti antibodies. But it might also be good to be titred up for antibodies specific to peripheral nerve; a lot of non-specialists just think to test the anti-nuclear antibody variants when autoimmune reactions are suspected.

This Quest clinical application paper written with expert Dr. Norman LAtov gives a list of the antibodies that can be tested for serologically; not all of them are anti-neuronal, but those are part of the list:

http://www.questdiagnostics.com/test...eralNeurop.htm

mrsD 07-03-2012 06:16 AM

People with antibodies to nerves typically show more global symptoms. Hands, skin over the body, etc. The antibodies are not specific only to the feet and legs. In the beginning, they may be "first" but typically a more global presentation begins.

Since your symptoms seem centered on the feet, I wonder if you have been to a good podiatrist and have had a complete workup for mechanical issues there? Compression (Tinel's sign), spurs, plantar fasciitis, arthritis in joints, sesamoid bone problems, neuromas, etc.

Here is a good site with alot of info about foot pain:
http://www.northcoastfootcare.com/
look around that site... it gives lots of advice from how to lace shoes different ways to take the pressure off the instep, to the anatomy showing the nerve distributions and tendons, and many other helpful things.

anabanana 07-03-2012 02:01 PM

Quote:

Originally Posted by mrsD (Post 893870)
People with antibodies to nerves typically show more global symptoms. Hands, skin over the body, etc. The antibodies are not specific only to the feet and legs. In the beginning, they may be "first" but typically a more global presentation begins.

Since your symptoms seem centered on the feet, I wonder if you have been to a good podiatrist and have had a complete workup for mechanical issues there? Compression (Tinel's sign), spurs, plantar fasciitis, arthritis in joints, sesamoid bone problems, neuromas, etc.

To clarify, my symptoms began with muscle weakness in my leg muscles(and twitching), as the weakness became worse, my feet, ankles, knees and hips began hurting more and more with time, becoming chronic. Other global signs are thinning of the skin, flaky skin, limited sensory type stuff(virbations, sharp jabs, hot spots), along with motor stuff (muscle weakness and global but specific twitching(fasciculations) of muscles), jerking of various muscles(probably called myclonic jerks). Along with heat sensitivity, fluctuating swallowing, breathless issues, and balance/unsteadiness issues.

anabanana 07-03-2012 02:11 PM

Quote:

Originally Posted by glenntaj (Post 893866)
--as does Specialty Lab of Van Nuys, California. There are probably other labs that do these now as well.

The most important antibodies to test for, I think, are the ones associated with neoplastic syndromes--the Hu, Yo, and Ti antibodies. But it might also be good to be titred up for antibodies specific to peripheral nerve; a lot of non-specialists just think to test the anti-nuclear antibody variants when autoimmune reactions are suspected.

This Quest clinical application paper written with expert Dr. Norman LAtov gives a list of the antibodies that can be tested for serologically; not all of them are anti-neuronal, but those are part of the list:


Thank you for this link!

mrsD 07-03-2012 03:59 PM

Quote:

Originally Posted by anabanana (Post 893993)
To clarify, my symptoms began with muscle weakness in my leg muscles(and twitching), as the weakness became worse, my feet, ankles, knees and hips began hurting more and more with time, becoming chronic. Other global signs are thinning of the skin, flaky skin, limited sensory type stuff(virbations, sharp jabs, hot spots), along with motor stuff (muscle weakness and global but specific twitching(fasciculations) of muscles), jerking of various muscles(probably called myclonic jerks). Along with heat sensitivity, fluctuating swallowing, breathless issues, and balance/unsteadiness issues.

Have you been worked up for myasthenia gravis?
That is an autoimmune disorder that attacks muscles, breathing and swallowing. From what I have read there, many neuros are not well versed with it, and getting proper treatment and attention requires several different doctor explorations.
Some people test negative on the various antibody tests for it too.
Here is their forum:
http://neurotalk.psychcentral.com/forum77.html


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