Let me add by saying that this new MRI (as well as any other MRI) is now available to patients with pacemakers.

I have a pacemaker and was a part of their pilot program. However, this is likely ONLY still available at Johns Hopkins, but they told me the study papers were being finalized very soon so that all facilities can utilize the same protocol.

http://www.hopkinsmedicine.org/heart...rillators.html

Again, it is NO fancy or different type of MRI, just using a different protocol (with very strict monitoring) so that pacemaker patients can benefit from these diagnostic tools also.

--have you seen the Liza Jane spreadsheets?

This was put together by Liza Jane--with considerable input from a number of us--to be as comprehensive a series of possible tests for neurological symptoms as current science allows, and it gets updated periodically:

www.lizajane.org

The Useful Websites "stickies" also has a number of entries at which dignostic protocols for neuropathy can be found--those given by Washington University's Neuromuscular conditions website and by Dr. Latov of Cornell Weill and Dr. Poncelet of University of California/San Francisco most prominently.

Thanks Glenn.

Yes, the "stickies" have lots of good info and links. Many of these things would have been sooooo helpful to me back in 1996 when i started my diagnostic journey. The Lizajane charts are a good idea for those who are just getting started and those with many questions about what needs to be or what has already be done...with places for comments on results.

Being that my problems include autonomic neuropathy, others systems (cardiac, GI, etc) are greatly effected. Therefore I use the same concept of file keeping as Lizajane suggests, just breaking them down by specialty.

Diagnostics is an ever changing field. I had been diagnosed for several years with multifaceted autonomic neuropathy, Sjogren's, and APS. However, as you know, PN pain can be difficult to pin down. Due to my pacemaker being implanted 7 years ago, I was unable to have an MRI...which excluded looking for a wide variety of possible causes for my PN.

Being that Sjogren's can attack both the brain and spine it was always felt there was inflammation in these areas. However, it is only now that I have confirmation of the ganglionitis thanks to 2 new protocols in MR imaging: allowing MRI's to be done on patients with pacemakers and also newer/closer looks at the DRG itself. My goal in posting this was to let people know that these new protocols exist and can help in the diagnostic process. I hope it's helpful.

Here is a new article explaining more issues with dorsal root ganglia and sensory neuropathies:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3287412/

more on dorsal root damage:

http://www.hindawi.com/journals/ad/2012/873587/

This explains damage very clearly:

http://www.myelitis.org/newsletters/...tter4-2-06.htm

Dear Mrs.D,

Please bear with me, I just wanted to make sure my understanding on DRG is correct - damage on DRG does not reflect on skin biopsy? I want to tell this to my doctor in my next visit.

You know sometimes, when I read I understand the words (as individually written) but i could not somehow connect their meaning in the whole context of the idea

Thank you.

In humans so far we don't know the answer to this question.

But I did find a link to a study in animals suggesting that
dorsal root damage precedes sensory neuron death in the periphery.

http://www.ncbi.nlm.nih.gov/pubmed/21924225

Thank you so much for the links! These are the clearest explanations I have seen. I was diagnosed last year with SF Neuronopathy (Ganglionopathy). It was confirmed by skin biopsy and the fact that my entire body is affected including my face and tongue. One thing that continues to baffle me is if the C fibers have indeed died back why do I not experience any deficit in my sense of touch? I only have these awful perceptions of burning and pins and needles. It would be awesome if you might point me to that type of information. It is a remarkable disease... Thank you in advance.

--on which fibers are preferentially affected; there are subcategories even within the smaller fibers.

Most actual mechanical touch receptors, though, are thinly myelinated fibers, not unmeylinated "small" fibers, which generally subsume the sensations of pain and temperature.