I haven't seen much on diagnostics & testing, so hope this opens the door for discussion about what people have found helpful and what's new.

When it comes to PN, many different tests can be done to look for the culprit....sometimes (actually, many times) still without finding an answer. They can include EMG and nerve conduction studies, skin biopsy for small fiber neuropathy, sural nerve biopsy, and of course basic xrays and MRI's to check for mechanical/structural problems where nerves may be damaged as a result.

I have had all of the above over the years, but minimal findings here & there didn't account for the severe nature of my autonomic neuropathy and now more pronounced PN affecting proprioception, balance, mild sensory, and pain in the neck, back, legs, and bottoms of my feet.

However, my most recent test provided the answer. It was the results from a new type of MRI to specifically look at the dorsal root ganglia, and referred to as the DRG protocol. This MRI w/contrast apparently uses a standard process (not the experimental water excitation) with a 1.5 tesla magnet. They could clearly see the ganglia...enough to determine there was bilateral enlargement and had an increased signal, both consistent with ganglionitis.

I also have the autoimmune disease, Sjogren's, which has known neurological manifestations to include a direct relation to ganglionitis. So this finding actually made sense and put many unanswered pieces together.

Anyway, the test may prove helpful for others where a definitive diagnosis has not been determine. It will likely not be available at your community hospital, but certainly worth checking out if you have access to large university hospital like Johns Hopkins, Mayo, Cleveland Clinic, UCSF, Duke, etc. Like I said the MRI is still "standard" in most regards, just utilizes a new protocol, so my insurance (Medicare) picked up the cost without question.

Of course, since there are MANY causes of PN, other simple tests should be checked first...starting with basic blood work. Maybe mrsD will pipe in with a good list of the basics in regards to diabetes and vitamin/mineral checks. I'd also like to hear if others have found specific tests (new or otherwise) helpful. Word of mouth is sometimes the best source of information.

I completely understand the frustration of not-knowing what's causing all the symptoms & pain. I struggled with finding a proper diagnosis for over 15 years. Therefore, maybe asking about what new testing is available at academic facilities can open the door for not just a definitive answer, but better treatment options as a result.

Thanks for making this post, and sharing information about the new MRI protocol available here.

Glenn is our "test" expert, having had many of them himself and informative discussions with his doctors.

This will be a great thread for new posters to consult!

Edit to add: This video explains the dorsal horn of the spinal cord:
http://www.medscape.org/viewarticle/754961
If you don't have a free membership, this link will prompt you to make
one. It is easy and free and Medscape has wonderful information worth signing up for on many health topics.

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

I started reading about dorsal root ganglia since Mrs. D updated your thread. I inquired last Friday from the clinic where I normally get my MRI about the DRG protocol. The technician I spoke to is not aware about a special protocol to specifically look for the dorsal root. However, he said that if the doctor will say what particulars to look for, they might be able to do so.

As you may understand, it is so difficult not knowing what is causing the changes in your system. When you continue to feel the pain, you start the route of diagnosing yourself, which I am very much aware is not healthy.

I believe you said in other threads that your skin biopsy was done at Hopkins, so I'll assume you are referring to a clinic at Hopkins for the MRI. I don't know whether a 'technician' will know about the DRG Protocol. The radiologist that actually read my MRI was Avneesh Chhabra, MD. He specializes in MR neurography (even wrote a book with the same title). I don't know if you mention a name whether it would help get you this specialized test or not...but it can't hurt. I would ask your neurologist about it (if he is at JH), not the MRI clinic. My test was ordered through my neurologist.

I will add that my neurologist specifically asked them to look at the DRG due to my Sjogren's diagnosis. I have also asked a radiologist on this forum about this protocol. He said he had not heard of it specifically under that name, BUT that a strong enough magnet could definitely see the DRG.

I understand (I really do), the need for a 'cause', but treatment is the key. IF you can find something to alleviate your pain/suffering, then the cause is just a name. It took years and years for a diagnosis of Sjogren's for me. Even though I had known in my mind that there was ONE cause for all my secondary diagnosis, I had given up hope of ever finding out what it was. I was always more concerned with finding a means to control my symptoms. I think we have ALL considered diagnosis for ourselves at some point in our medical journey. Being your own advocate with your doctor is the best thing you can do for yourself. Stay on top of your testing and learn about your symptoms so that you can have productive discussions with your doctor.

My skin biopsy was done here in Jacksonville by my neurologist. However, i was informed the specimen was sent in John Hopkins. The result has the name "THE JOHN HOPKINS MEDICAL INSTITUTION" on its written report . I called the Cutaneous Nerve Laboratory of JOhn Hopkins to get my report which shows the "numbers", but I was asked for a reference number from my doctor.


I agree with you that treatment of the symptoms is very important. But, I am really hoping, while I am still in the "early" stage of my neurological symptoms, to at least find teh cause. I always read that treatment of the cause of the nerve damage is crucial. I am thinking that if we could find the cause now, I may still have the chance to improve. Along side the efforts of finding the cause, I am taking taking actions to alleviate the symptoms by taking the supplements that can help heal the nerves.

Thank you en bloc for all your answers. I hope you will not get tired of replying to my inquries.