[WayneR]

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. (This has been referred to as "Sunburn Syndrome" in some papers.) 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.

[rmschaver]

Sorry to hear about the nueropathy sounds awful. I have seen other threads here about this and I am sure other more knoweldgable people can give some advice.

Jope you feel better.

[Darlene]

WayneR,

Hello and welcome each of you to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Check into the following forum just by clicking, you will find a large group of fellow members to help with your questions.

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

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[heb1212]

Originally Posted by WayneR

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. (This has been referred to as "Sunburn Syndrome" in some papers.) 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, Wayne... Also from upstate, and unfortunately also share in common your neuropathy symptoms. So first off, after intros, let me extend sincere sympathy for your health plight. It does dramatically affect every aspect of life. My skin biopsy was on the low side of normal for nerve fiber density and showed occasional axonal swellings "of unclear significance." Ha ha... painfully clear and significant to me! That was early on in the monhths long progression of my "neuropathy type" symptoms, though, and I need to wait six months before I can have another biopsy. Since then, the burning, which started in my feet and legs, has progressed to involve my entire body, including my scalp, face, eyes, nose, mouth, etc., like you, so I wonder if the biopsy results will become more definitive and maybe, hopefully, result in a different treatment option. So... I REALLY do understand in a way that NO ONE ELSE can what you're going through and am sorry. I wonder... do they (the docs) offer any possible explanation as to why or what may have triggered this in your case? I had a virus last summer, and I feel as when all else has failed, they say "post-viral" for me. You can't help but reach out to others to try to understand, try to unravel the mystery of something that so suddenly turned your life upsidedown.
In God's grip...
Heb1212

[Patricia Kelsey]

Hello, I just saw your post for the sunburn syndrome. I was diagoised with this at the John Hopkins . I never heard of such a thing in my life. I have severe skin burning especially on my face and chest. I get no relief at all. I was wondering how you are doing with this syndrome and if it effects your different senses at all. It has been years since I had this diagnosis but it would come and go. Right now it is constant and I have no idea why.... I am about at the end of my rope with this because it is constant... How are you doing with all of this.. ? Would love to hear from you.... thanks, Pat

[Rrae]

Originally Posted by Patricia Kelsey

Hello, I just saw your post for the sunburn syndrome. I was diagoised with this at the John Hopkins . I never heard of such a thing in my life. I have severe skin burning especially on my face and chest. I get no relief at all. I was wondering how you are doing with this syndrome and if it effects your different senses at all. It has been years since I had this diagnosis but it would come and go. Right now it is constant and I have no idea why.... I am about at the end of my rope with this because it is constant... How are you doing with all of this.. ? Would love to hear from you.... thanks, Pat

WELCOME to NT!

You've come to a wonderful place of support and understanding!
You'll find many caring people here. Make yourself right at home and post anywhere you feel inclined.

Just holler if you need help finding your way around or if you have any questions. This is a very down-to-earth atmosphere and people are very easy to talk to.

It's great to have you join us!

Rae

[Darlene]

Pat,

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 condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[amike]

Originally Posted by Patricia Kelsey

Hello, I just saw your post for the sunburn syndrome. I was diagoised with this at the John Hopkins . I never heard of such a thing in my life. I have severe skin burning especially on my face and chest. I get no relief at all. I was wondering how you are doing with this syndrome and if it effects your different senses at all. It has been years since I had this diagnosis but it would come and go. Right now it is constant and I have no idea why.... I am about at the end of my rope with this because it is constant... How are you doing with all of this.. ? Would love to hear from you.... thanks, Pat

Hi Pat, Wayne, and Heb1212,

I'm new to the board and I am hoping to touch base with other folks who have non-length dependent small fibre neuropathy / ganglionopathy aka sunburn syndrome. I have had this since at least 2007 but had no idea what it was until I finally found Gorson, et. al's 2008 article of the same name on the web in the Journal of Neurology, Neurosurgery and Psychiatry. I didn't find it until about a year ago, but when I read the paper it was like heaven to finally read about symptoms that fit mine so perfectly. Prior to that I was diagnosed as having fibromyalgia which I may or may not have! My "sunburn" is primarily on my face and both thighs as well as just below both of my elbows. The pain was so bad that I went to the emergency room once a couple of years ago and was hospitalized in a psychiatric ward as suicidal. That was a trip.

Things have been a little better the past year as I now have a pain management doctor and am on Tramadol (as well as Lyrica, and Cymbalta from my fibro doctor). I have had type 2 diabetes for over 15 years and I believe that is the reason for the neuronopathy. None of the doctors I consulted had ever heard of this and, as far as I know, I am the only person in Hawaii with this. I'm 56 and live in Honolulu.

You folks are the only people I know with this syndrome. If you have any kind of a support community, I would love to join!

Mike

[Darlene]

Mike,

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.

[heb1212]

Originally Posted by amike

Hi Pat, Wayne, and Heb1212,

I'm new to the board and I am hoping to touch base with other folks who have non-length dependent small fibre neuropathy / ganglionopathy aka sunburn syndrome. I have had this since at least 2007 but had no idea what it was until I finally found Gorson, et. al's 2008 article of the same name on the web in the Journal of Neurology, Neurosurgery and Psychiatry. I didn't find it until about a year ago, but when I read the paper it was like heaven to finally read about symptoms that fit mine so perfectly. Prior to that I was diagnosed as having fibromyalgia which I may or may not have! My "sunburn" is primarily on my face and both thighs as well as just below both of my elbows. The pain was so bad that I went to the emergency room once a couple of years ago and was hospitalized in a psychiatric ward as suicidal. That was a trip.

Things have been a little better the past year as I now have a pain management doctor and am on Tramadol (as well as Lyrica, and Cymbalta from my fibro doctor). I have had type 2 diabetes for over 15 years and I believe that is the reason for the neuronopathy. None of the doctors I consulted had ever heard of this and, as far as I know, I am the only person in Hawaii with this. I'm 56 and live in Honolulu.

You folks are the only people I know with this syndrome. If you have any kind of a support community, I would love to join!

Mike

Hi, Mike... I haven't been on this site for many months, and just happened to check today. I think you may have found your "support group" here. My neuro has told me he has, in fact, seen other patients with a body wide neuropathy, but it sure isn't something most people have ever heard of. It makes the experience all the more isolating and intolerable, I think. I have had a few more developments since I last posted... including a finding that I have an active, persistent virus (parvo virus b19) that I first contracted two years ago and, in a select few, can cause neuropathies. I had a sfn biopsy done a year and a half ago that was borderline with "occasional axonal swellings" and not another one since, though I am going to ask again when I see my doctor this month. I'd like to see if there's been a progression diagnostically as there sure has been a progression physically. I see you take both cymbalta and lyrica and tramadol... wow! I've been trying to tolerate increasing doses of gabapentin and just a month ago added nortriptyline. I've been very resistent to the cymbalta as I've heard the side effects can be awful with a need to steadily increase doses to achieve the same effect. I am struggling to work full time and raise a family, so it's a trade-off between chronic pain and side effects, I guess. From reading your post, I see the assumed root of your neuropathy is diabetes. Have you been offered any hope for improvement with time and tight control of your diabetes? I sincerely hope so. Patience and hope is sometimes hard to hold onto, though, isn't it? I'll check in a little more ofen to offer my thoughts, at least. My hope is rooted in the Lord... he's so much more reliable than doctors!