NeuroTalk Support Groups - Diagnostics & Testing~~ for dorsal root ganglia and damage:

NeuroTalk Support Groups (https://www.neurotalk.org/)

- PN Tips, Resources, Supplements & Other Treatments (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/)

- - Diagnostics & Testing~~ for dorsal root ganglia and damage: (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/147771-diagnostics-testing-dorsal-root-ganglia-damage.html)

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.

Thank you so much. I assumed that it had to be something like that. It is strange, however, how stretching the skin slightly like closing my hand or the breeze on my face or the movement of my clothing can be painful.

Quote:

Originally Posted by en bloc (Post 758457)

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.

Any idea what contrast is used? I had a contrast MRI (not nerve related) that used gadolinium. Nothing bad happened, but I was definitely worried about injecting a heavy metal into my body and would like to avoid it if possible.

Quote:

Originally Posted by WayneR (Post 900756)

Hi. I have the same over-sensitivity in my skin - legs, arms sometimes back and face. I also have painful feet. So far, there has been no cause found in my condition. Mine started in all the areas I mentioned. Do you feel pain with the touch of your sheet? I do.

I don't know if this common, when I wake up in the morning I don't feel the stinging (like sunburned skin), burning sensations. But once I get up, there it goes again.

I take gabapentin and a whole bunch of supplements. I just recently increased my gabapentin dosage from 1200 to 1500mg. It makes the pain tolerable. For two days now I'm using Lidoderm patch for the feet. It is not 100% pain free feet but it makes me move around.

Gadolinium:

Here is more information on this contrast agent:

http://www.fda.gov/Drugs/DrugSafety/.../ucm142889.htm

Video illustrating dorsal root pathways:

http://www.medscape.org/viewarticle/754961

This Medscape video is very good at describing the dorsal roots along the spine, and explaining neuropathic pain.

You may have to pause it when the slides come up listing treatments, as they are very brief.

This video requires a membership to Medscape which is free and easy to do. Medscape from then on will be accessible to you and there are many good features there on health topics in general.

Hits home with me

Quote:

Originally Posted by Idiopathic PN (Post 908106)

There is a strong circadian pattern to my NLD SFN/G. When I get up in the morning all is well. However across the day, burning in my thighs, arms and face gets worse. I'm typically most miserable in the evening when I am trying to relax after work. It may be that I have fewer opportunities to get fully engaged in a task that limits my awareness of pain, but watching TV at night is a high probability time to notice pain. Probably a statement on the quality of TV programming. :)

Quote:

Originally Posted by amike (Post 973270)

I would wonder if you have an inflammatory thing going on?

Late afternoon is when your cortisol levels dip, and they come up a bit after dinner. Then fall again around 4am. Cortisol is your natural anti-inflammatory, from the adrenal glands.

You could try our AlkaSeltzer original formula trick, to see if
it helps. If it does then you have some inflammatory thing going on with your PN. AlkaSeltzer works fast, and has aspirin in it in solution, so is less irritating to the stomach. Do not use if you take blood thinners or have a bleeding disorder.

There are several versions of AlkaSeltzer, don't choose the Cold types. Original formula is the one that works.

Inflammatory types of PN can be arthritic, lupus, compressions in the spine, etc. Eating an anti-inflammatory diet may help.
Also some natural anti-inflammatories like bromelain (enteric coated), curcumin, quercetin, etc, may work too.

Did I ask you about using any ACE inhibitor drug for hypertension? If you use one, this could be causing your problem too. They raise bradykinin in the body, which dilates blood vessels and this puts pressure on nerves.

I like the sound of...

Quote:

Originally Posted by mrsD (Post 973293)

I would wonder if you have an inflammatory thing going on?

You could try our AlkaSeltzer original formula trick, to see if
it helps.

Did I ask you about using any ACE inhibitor drug for hypertension? If you use one, this could be causing your problem too. They raise bradykinin in the body, which dilates blood vessels and this puts pressure on nerves.

... the "AlkaSeltzer Trick." It sounds like something out of James Bond. :) Is there a string you could point me to that discusses the specifics of the AT? (like when to take, what to look for?, etc,)

I am on Ramipril 10mg for hypertension. I'm not sure if that is an ACE inhibitor.

I'll try and post something in the new members section over the next day or two, as I am new to the board and just started posting in out-dated threads.

Thank you!

Mike