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Subject: "Magnetic Resonance Neurography(tired of nerve pain)"     Previous Topic | Next Topic
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Conferences Neuralgia / Pain Topic #407
Reading Topic #407
hookedondew
Member since Jan-4-09
15 posts
Aug-31-11, 04:39 PM (CST)
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"Magnetic Resonance Neurography(tired of nerve pain)"
 
   Ive posted on here before about having a possible connection, which I thought at one time was nerve pain in the legs and thighs due to HSV2. I have never had a visible outbreak. Anyway, I will get to the point that I know pretty sure it is not, because I did not have any nerve pain until 2 1/2 years after the blood test. I woke up one morning, and there was throbbing and burning in my thigh. It would not really go away and was working its way into the groin. I was taking valtrex after this started-didnt help. It then was like pins and needles from the waist down. I got on famvir for over a year-didnt help. Eventually I went to a Neurologist and got on Gabapentin and have been seeing those for 3 years. I have had 2 MRI's - findings nothing significant. I have also had 2 X-rays of the pelvis and one of the hip joint - all normal. Right now I am sort of at ends wit and frustrated. I am only 36(male). They have a fairly new diagnostic test which is called a Magnetic Resonance Neurography, which actually shows the nerves. I looked into it, and called them and it may seem like something useful in diagnosing this "phantom pain". I have to talk to my Neurologist and convince him to sign the order form. Only down-side is my insurance will not cover the cost. It is @$2000.(i have the money saved. Several major hospitals use them,John Hopkins, Mayo Clinic,etc not many. I called the Neurography Institute and they have a scanning location here locally. I believe someoene did have a surgery done on here by their head Neurosurgeon and got some relief. I really do believe this neuropathy is caused by some entrapped nerve. There was this one case where a woman had pain in her leg for 3 years and they found a benign tumor in a nerve using this scan, that a regular MRI did not pick up. Like I said, at first I thought it was caused by herpes, but I was fine for 2 whole years, didnt even think about herpes. Any thoughts??


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TheOriginalScooter
Member since Aug-29-10
25 posts
Oct-06-11, 09:31 PM (CST)
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1. "RE: Magnetic Resonance Neurography(tired of nerve pain)"
In response to message #0
 
   LAST EDITED ON Oct-06-11 AT 09:34 PM (CDST)
 
I was always encouraged by doctors to look for another source of my nerve pain when I contracted HSV2 in Oct of 2007. And I did, at times driving myself crazy in the pursuit of relief from the debilitating nerve pain that consumed my every waking thought. In the 4 yrs that I have had HSV2 I've gone fairly long periods (maybe 2-3 months) where I felt pretty good. But be mindful that a "good streak" was where I could tolerate the discomfort and work. The first 3 yrs after contracting the virus I had almost a constant burning on my labia majora - each side. There were many days I obsessed over how to get rid of the pain. I've posted quite a bit on this board so I encourage you to read up on my posts.

I'm going to get to the point w/o rambling - I believe that this virus can be quiet for long periods (that doesn't mean it's not replicating on some level check out the article Herpes Never Sleeps) and then w/o provocation or good reason rear it's painful head. I have had periods where the meds have worked and then the meds have not worked. What kick starts that process I don't know.

I believe that my post herpetic neuralgia is caused by the virus. I have had ALL the tests and talked to ALL the doctors and spent thousands of dollars and NOTHING was ever found. The pain management doc found no pre-exisitng problems nor did the neurologist. I was finally diagnosed by a UCLA doc with phn who asked if I had CNS herpes. That I don't know I'm not going for a spinal tap.

Maybe look at some outside factors stress, diet, etc that could be aggravating the virus. Good luck I hope you are feeling better and find some peace. I KNOW what you are going through hang in there for me it's peaks and valleys with this disease. I still have bad days and I take one gram of valtrex daily.


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