Hi Ducati have tried sending you a PM still not working you will need to post a couple more I reckon x



Thanks Mrs D afraid not working

Try again in a day or two. The specs for that operation change here from time to time. But it is not long.

Just post to each other a few more times and it will open.

Thanks again MrsD

Hi Ducati the PM has worked now I have sent you my email address, it will tell you you have a private message under your name at top right hand corner

Liz,

Could you please tell me what your symptoms are and how they knew it was neuronopathy/ganglionopathy and not neuropathy?

I have non-length dependent sensory neuropathy all over my body. I get sensations of water, cold, heat, stinging, buzzing. It can feel like random water drops or provoked by pressure. It is not in the same place.

I don't know if this forum has private messages, I haven't been able to find it yet, but I added you as a contact.

This is my second time having this. I had it once before and it lasted for about 6 months or more and I was very worried, BUT then went away for over a year! I guess it finally healed. BUT, now it came back one day and I'm taking it serious. I don't know if it is because I got a bad cold or something I ate or what but I guess the same thing did it again.

I went to Hopkins and got a small fiber test while I still had it the first time and the test was negative, but they said they thought it was immune mediated small fiber neuropathy.

Thanks

Liz,

How can I find out if I have ganglionopathy / ganglionitis vs. small fiber peripheral neuropathy? What test did they do to find this out for you?


This is dorsal root / (AKA spinal) ganglionitis from what my searches explain. This means it is not around the body in the skin, but instead at the root, in the spinal cord. I'd like to know how they can tell where it is. Obviously a positive small fiber test would suggest it is there (assuming one doesn't affect the other), but if the test is negative for small fiber that isn't conclusive.

Thanks

We have a thread here on dorsal root tests:

http://neurotalk.psychcentral.com/thread147771.html

--may involve primarily the smaller, unmyelinated fibers, reduced density of which may well shop on skin biopsy, but in such cases the tendency is for the reduction in intraepidermal nerve fiber density tends not to be "length dependent"--that is, more pronounced at the distal extremities as it is in most more classic presentations of "regular, die-back" neuropathy syndromes.

One very new test, that you will find referenced in the thread Mrs. D linked you to, is the DRG MRI, in which the dorsal root ganglia can actually be imaged--though it is true this is not offered many places yet and there are not many radiologists familiar with interpreting these specific images. The test is an extension of magnetic resonance neurography (MRN), which is a protocol that's been kicking around about two and a half decades now but is still considered experimental in that most insurances won't pay for it.

Take a look at:

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

http://www.biomedsearch.com/nih/MRI-.../18380696.html

http://europepmc.org/abstract/MED/16...TZN8RXdberT.18

http://en.wikipedia.org/wiki/Magneti...ce_neurography

New in this forum... Hoping to find something that i can tell my dr. to help me feel better.

I'm a new member and haven't introduced myself yet. But, I came across this thread and had a few questions. Is it possible to have a negative skin punch biopsy and have dorsal root ganglionitis/neuronopathy?

Burningbody,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.