Small Fibre Sensory Neuronopathy
 

Hi all,
New to this, first post, I am a 57 year old woman who lives in Scotland. I was diagnosed last year with small fibre sensory neuronopathy after being diagnosed 8 years ago with peripheral neuropathy, I cannot find much information on this condition as it is very rare, it has worsened over the past couple of years which promted my neurologist to send me to see a professor in London who did some tests and came up with the diagnosis, I would be very grateful if anyone has any information they can give me as I do not know if my condition will get any worse. Thank you for taking the time to read this.

Welcome to Neurotalk--
 

--And you should definitely come on over to the Peripheral Neuropathy section here, and read and read and read:

http://neurotalk.psychcentral.com/forum20.html

By the way, small fiber sensory neuropathy is far from rare. It is the most common presentation of neuropathy among those who are diabetic, and it is also the most common idiopathic presentation (as many as a third of those with small fiber neuropathy have no discernable cause for it).

When you were diagnosed with peripheral neuropathy, you were just being diagnosed with damage to nerves outside the brain and spinal cord--the term doesn't indicate type or cause. Small-fiber neuropathy, which is by definition sensory and/or autonomic (unmyelinated or "small-fiber" nerves are not involved in motor functions) is a bit more descriptive, but not much more.

See:

http://neuromuscular.wustl.edu/sensory-small.html

http://neuromuscular.wustl.edu/senso...tml#idiopathic

Small Fibre Sensory Neuronopathy
 

Hi Glenntaj thank you very much for the welcome and the information, it was my neurologist that informed me this condition was very rare and that is why there has not been much research done. :confused: I am glad I have found this site there seems to a lot of very helpful people on here and a lot of useful information. My condition affects my hands ,feet ,face bowel and bladder, I have been tried on every medication there is but some had no effect and the rest I had very bad side effects, six months ago they decided to try me on Ivig(I get every three weeks) although not fantastic but helps keep the pain bearable, if anyone has the same symptoms as me please get in touch thanks again xx

Neuronopathy is a form of neuropathy.

I hope there is no confusion about that?

I put up a post with a link for you Villier, on PN forum here:

http://neurotalk.psychcentral.com/post893155-36.html

So it might be a good idea to check your spelling, to see if there has been a confusion?

small fibre sensory neuronopathy
 

Hi Mrs D
Thank you so much for your info my spelling is not wrong my condition is neuronpathy I have looked at dorsal root ganlia which was stated in a letter from the Profesor I saw in London I cannot find too much information on the subject that is why I have contacted this site to see if anyone can give me some answers :grouphug: xxx

Links have been helpful thank you for your reply just getting to know how this works

Neuronopathy--
 

--as a subset of neuropathy is rarer than other kinds of neuropathy, but likely not as rare as many people think; many have evidence of attack on the dorsal root ganglia.

Sjogren's syndrome is the most common association with this, but there are plenty of idiopathic cases.

See:

http://neuromuscular.wustl.edu/antibody/sneuron.html

Small Fibre Sensory Neuronopathy
 

Hi Glentaj thanks again for the information, I have been tested for sjogrens as for everything under the sun but nothing has shown up as to what is causing this, I have had very specialised blood tests done mri scans, emg, skin biopsy and the paper test in my eyes(can't remember what it is called) so do not know if there is much left to test, I will probably see my consultant on Wednesday when I am on the ward to get my Ivig I must ask him if it is idiopathic.

Small Fiber Ganglionopathy (Neuronopathy)
 

I am a 64 year old male and I am new here. In January of 2011 I started having burning around my trunk at the level of my navel. Over the next two months the burning involved my entire trunk and began moving down my legs and arms. A skin biopsy confirmed the dying back of small nerve fibers. After another month the burning covered my entire body including my scalp, face and tongue. I also experience disturbances to my sense of taste and smell. The biopsy and the involvement of my trunk and face confirmed the diagnosis of Small Fiber Ganglionopathy (Neuronopathy). The tricyclic Desipramine is providing significant relief from the worst symptoms but this Neuronopathy has dramatically affected my life.

Hi Wayner my thoughts are with you, I know exactly how you feel, I to was diagnosed with the skin biopsy, my problems started eight years ago with a tingling in my fingers which progressed to my toes a while later, a couple of years later it had turned into a burning throbbing pain in hands and feet and by this I had a tingling in my face and perineum also a dryness in my mouth which I was tested for sjogrens came back negative, a year and a half ago I started having problems with my bowels and bladder, over time I have been tried on every medication from pregabalin, gabapentin, amytriptiline, lidocaine infusions, mexilitine you name it I have tried it, I either had bad side effects or they didn't work, ten months ago after seeing a professor in London who diagnosed me, his suggestion was to try me on Ivig which I get every three weeks it helps a bit it brings my pain to a bearable level although it dips just after two weeks and then it is back to a lot of pain and sleepless night until the next infusion, as you say it dramatically affects your life, I am so glad I found this site as there are so many helpfull people with a lot of knowledge,I have found out more about my condition from here than I have from my neurologist it has given me an insight into questions I will be asking him in a couple of weeks time. I am glad you are getting significant relief from your meds. Take Care Marie