the first tests i had after muscle/nerve tests were a series of ultrasounds and x rays of the few places that had not already been done for other reasons.

i looked blankly at the neuro and said *why*.
"malignancy" she said, is large cause of idiopathic PN (even tho she knew the flu vaccine had done it)

i got all kinds of odd things inside me.....but nothing malignant

i wish u well. i understand the pain and frustration

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Thank you amike, I hope you are finding ways to be more comfortable, too. I appreciate your reply.

Kate

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Thank you so much Ginnie. I haven't heard of Ketamine shots but will certainly look into it. Both my neuro and lyme specialist are urging me to add elivel (sp) to the nuerontin to help ease the pain. I am being overly stubborn I suppose. I am terrified to get stuck in the pain medicine trap like I feel I've already been in the past 4 years of being on neurontin. Don't get me wrong, not feeling like the flesh is being burned off the bone had been wonderful but it also gave me a feeling of false security. Was this disease worsening all the while but I just didn't feel it?? I have a pharmacist friend who told me that neurontin does become less effective over time so perhaps that's what's happening? It may be a bit of both.

I got my skin biopsy results back and the nerve fiber density is HALF of what it was when I had my last biopsy in 12/11. NOT a good sign. I'm still within the normal range, but not for much longer. Grrrrrrrrrr.

Since I last wrote, we decided to go back to the B12 injections. I had stopped them because I was breaking out all over my face and neck. At that point, the oral seemed to do the trick. So I've been back on the 10mg injections and am at least able to sleep at night. I do burn in my feet and legs (and inside my mouth- ugh!!) from the second i wake up however, but I'll take the overnight "relief." I used to have the mouth burning a few years ago but thought I was passed it.

I met with my lyme specialist in upstate NY (I live in CT) yesterday and his two non negotiables were going back on a low dose antibiotic and intensely supporting the mitochondria with supplements. Other then that (and continued B and ALA/NAC), plus IVIG, Im not really sure what else there is.

I asked my Yale neuro about the dorsal root MRI and his receptionist told me he had never heard of it WHAT-ever!

I can't seem to find where it's done, though I have scoured the internet like crazy. I think someone mentioned john's Hopkins...do you happen to know if they require a referral to be evaluated? I went through their neuro department online and it didn't mention the diagnostic equipment they have.

Thanks so much for all your support and kindness, it's greatly appreciated. Please keep the suggestions/ideas coming if you think of any. Have a wonderful day!!

Kate

hope this helps


http://www.hopkinsradiology.org/Musc...al/Neurography

http://www.youtube.com/watch?v=Y6kAZr6BUc0

http://www.neurography.com/locations

The kind of Ketamine I have heard about is through IV. It was origionally tried on soldiers who came back injured from war. They have neuro damage, and this medication showed promising results. John Hopkins May need a refferal. I have heard mixed results from people who went there for Neuro damage.\
I came from the mid-west, and I was always worried about lymns disease, since my back yard was woods.
I hope you get some adequate help, and that your symptoms just go away. My own PN is lousy in my foot and ankle, I can't imagin what you must feel. I just wish doctors paid attention more to this kind of pain. Take care of yourself Kate. Keep trying.

I had Ketamine infusion through a catheter, before my last spinal fusion. It brought me about 4 months of pain control. The doc. used a floroscopy to thread through the spinal area that I had damaged.
Ginnie