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Unexplained Neuropathy
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Unexplained Neuropathy

Since Feb of this year I have struggled with peripheal neuropathy in my legs from the waist down, my whole body now hurts. I am a mother of 2 and can't feel like this! I have been to neurologist, my pcp, the er, a rheumatologist & they all scratch their heads. I had some albumin in my urine & some sort of strand in my immunofixation test but not my serum. I had an mri of my brain, cervical area & thoracic area w/ and w/o contrast. In my thoracic area my neuro stayed in my spine like 2 magic marker lines on either side of my spine, he also stated that I have a strange ligament structure between a couple vertebraes that are also swollen but not touching my spinal column so shouldn't cause problems. I have a bulge at c5-c6 as well. I also have hip bursitis, migraines, dequervaines (sp?) tendonitis & tennis elbow, and I am not an athlete of any sort!

I also have galactorrhea for an unknown reason, as I never breast fed & my hormone levels are normal. My youngest is 20 months.

All of this started when I contracted herpes simplex-2 back in Feb. from my husband who did not know he had it. every doctor I have seen tells me it is not related. I have been told I have neruopathy, vulvodynia, fibromyalgia, possibly ms or transverse myelitis.

I am on prozac, neurontin, a beta blocker, pain pills, elavil & at times a muscle relaxer this is getting ridiculous.

Any suggestions? I have been thinking of getting all my records and going to Cleveland or Mayo Clinic!
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8 Comments Post a Comment
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Avatar_f_tn
i too have nerve pain: burning & aching in my arms, hands, legs and feet.  i have never had nerve pain before i was diagnosed with genital herpes 2 in aug 09.  The pain comes and goes and my gyno-oncologist said it is the herpes that is causing it.  i had tryed lyrica, got relief but gave me alot of side effects. so i am on nothing but i would like to see a neurolist just to ease my mind that it is not something else causing this.  i saw this post and i had to share cause we can relate with herpes.
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Avatar_f_tn
I have had so many tests & all my docs tell me it is not from herpes, although I have seen on other websites people with the same problem. It makes sense that it could occur, people with herpes zoster (shingles) get nerve pain, so people with herpes simplex I would think could also have nerve pain/damage.
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Avatar_f_tn
i totally agree!!! it seems to be to much of a coincedence that several people have this occur around the same time that they get herpes.  i have alot of health issues, so that is why i have to question it, but this nerve pain occured at the same time.  only one dr believed that it was from the herpes but i have not seen a neuro on it yet.
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Avatar_f_tn
Well, my Neuro won't acknowledge that it is from the herpes virus...he keeps telling me you could have MS, but I don't really think so, lets do a spinal tap, to which I said no. I mean the coincidence is just too strong for it not to be caused by the herpes virus, I just want someone to put me on the right meds to make it stop!
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Avatar_f_tn
does the neurotin help you?  i only tried lyrica, but it made me have nausea and lightheadness for about month.  i  guess no one will ever be able to prove that herpes is actually the cause of all this pain.  do you also get body aches all over?
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Avatar_m_tn
This is something you do yourself to help the body fight the symptoms. Do the pranayam and when you notice any benefit, come back to post here. Then I will suggest some more techniques.The extra oxygen going into the body does help.The benefits are gradual, so allow time.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam–
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
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Avatar_f_tn
i know my nerve pain and body aches are probaly from the herpes because it all started together, but sometimes i cannot help but think that maybe a certain type of  cancer is in my body causing this.  because i noticed alot of people with cancer have developed some form of nerve pain or body aches.  what do yall think?
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Avatar_m_tn
I agree there seems to be a pattern with herpes victims and post viral neuropathys. I had Ocular herpes which seems to have brought on my polyneuropathy. My neuro kinda contradicts himself on this,,,, first he says these symptoms only come after VZ (shingles) but then he states he thinks mine is likely post-viral polyneuropathy.
My only hope is that the conditon improves so I can enjoy painless days again.
One thing's for sure,, I will never take good health for granted anymore and I have a new found sympathy for all in poor health.
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