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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
Member since Jan-4-09
15 posts
Aug-31-11, 04:39 PM (CST)
Click to EMail hookedondew Click to send private message to hookedondew Click to view user profileClick to add this user to your buddy list  
"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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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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