Liz, Villier, I too live in Uk and am facing this diagnosis. Things are happening to me very quickly and it's more than difficult to face. My symptoms started at end of January and are progressing fast. I'd love to communicate. How do we exchange emails?

Welcome to NT

So sorry for so many in this world suffering. This is a great place to one together, with lots of information to discover.

It is good o know we're not alone here.

Best to all.

How did you all get tested for small fiber nueronopathy/ganglionopathy, as opposed to small fiber neuropathy? I saw info in these forums about non length dependent SFN and the subset where it is focused in dorsal root ganglia. My symptoms and pain are very broadly dispersed throughout my body, so wonder if I fit into this subset. but I asked my neurologist about this yday at my appt and he sort of dismissed it, said it is too difficult to examine and irrelevant...I am assuming I have my definitions mixed up, but curious if different tests and also if presents different treatment options. Thanks

There is a special MRI for the dorsal roots:

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

Doctors may or may not know about this.

Some doctors assume the dorsal roots are involved, damaged, etc, and
don't feel the MRI is necessary.

Wel ome liz.

Hi Ducati would love to communicate with you but you will have to reply to a few posts before you are allowed to use the pm facility, once you do that pm me and I will gladly send you my email address, I know too well how you are feeling, look forward to hearing from you x

Hi

I got my diagnosis of neuronopathy after I had a skin biopsy taken from my calf, it showed I had elevated fibres and over expression of ion channels that are related to pain, this is similar to people with an inflammatory proximal neuropathy affecting the dorsal root ganglia or the nerve roots, my consultant also said that because mine started in my hands was also another clue to the diagnosis. I hope that you can get some answers soon and that mean time you are able to control your pain....................take care x

Hi, how do I do this. I hope this reply will be another one!

@ villier...

Try sending a PM now, for Ducati.

Ducati may be able to "reply" to it now.

Private Messages can be accessed in the upper right corner under your name after you log on. If it doesn't show, then you
need to post a little bit more.

Hi, Liz... First, very sorry for what has brought you here (really). I wonder if you could share the type of pain you experience with your condition and how it was diagnosed? I have burning/tingling/paresthesia body-wide that came on progressively in a matter of months over a year ago shortly after a viral infection. I had a small fiber skin biopsy that was at the very low end of normal ranges early on, but the pain has become so much worse since I wonder if another biopsy would show a progression. The information found here through so many people has been so invaluable. Also, what medication, if any, have you found useful? Do you have chronic, non-stop pain or are there windows during the day when you feel a bit better?
Many Thanks for your time and response... with wishes for a touch of Grace today.
Cathy