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Old 07-23-2012, 07:18 PM
villier villier is offline
Junior Member
 
Join Date: Sep 2010
Location: Loch Lomond Scotland
Posts: 60
10 yr Member
villier villier is offline
Junior Member
 
Join Date: Sep 2010
Location: Loch Lomond Scotland
Posts: 60
10 yr Member
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Quote:
Originally Posted by WayneR View Post
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
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"Thanks for this!" says:
Liz01 (10-20-2012)