Quote:
Originally Posted by ginnie
I am so sorry to hear you have a worseing of PN. Lymn disease, or any number of auto immune disfunctions can trigger this. I don't think The IVG therapy made it worse. If you can, look into Ketamine infusions. Sometimes they do this for RSD. There is a facility near me that talks about it on their web pages. Tampa Bay Hospital. Origionally they did this for soldiers severely wounded and left with neuro pain. Doctors are now doing this for RSD and PN. If you have this body wide, I believe this treatment is available somewhere in this country. Please don't hesitate to ask your doctors for more help with pain. I hope you have good physicians that have some compassion and maybe able to stear you to another type of therapy. I take pain killers for it, I am not brave enough to do without. Have it only in my left foot and ankle. I can't imagin this being all over. I hope you can find more help. Have you tried a teaching institute or Mayo Clinic? I wish you less pain today. ginnie   |
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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