Thank u englishdave.

How ling have u been on these? Any med failure ( no longer work as well).

Canagirl,
I know its as bad as you say. I know that the pain and lack of sleep is like living hell. I can just tell you from my experience that as this neuropathy/illness/autoimmunity- whatever the heck this is slowly crept up on me and then hit me like wildfire, I was unrecognizable to myself.
I thought I was invincible. I was a happy mom, wife, and holistic health counselor- and the picture of health. I was loving life!
and then...it all fell apart.
I just want to tell you that this pain and suffering and lack of sleep turned me into someone else. I became depressed and anxious. It only made everything worse. I was so sad. I can't play my guitar. I can't spend hours in the kitchen creating recipes for the book I was working on. I was fixated on the future and what would happen.
I went through 4 months that I couldn't drive. I couldn't turn the steering wheel. I was so disoriented that I felt drunk all the time and had a hard time following conversations and comprehending things. I couldn't read because there were missing spots in my vision. The pain was crippling.
I can drive now. My cognitive function is improving (still not normal) and I don't feel as drunk as often. I have a lot of pain, stinging, pulsing, shooting, stabbing, breathing, burning, muscle spasms- but its not as intense and constant as before.

I feel that something is shifting very slowly in a positive direction. I am coming out of the depression and meditation is helping.
When that doesn't help and I need a break from the muscle spasms and nerve pain I take 1/2 oxycodone and 1/2 valium together. It gives me about a 2-3 hour break and resets my pain threshold. I don't want to become dependent on it and I want it to work when I'm desperate so I only take it a few times a week when absolutely necessary.

I hope that helps. I hope you get through this acute phase and that it calms down. I am thinking of you

Canagirl,
I am into my 8th year of Lidocaine Infusions, have them every 4 weeks. Ketamine I think 4-5 years, but things are hazy today. No reduction in effectiveness as they are both anaesthetics, so work differently to other meds.
I noted down their actions a while ago, can find Lidocaine now: Blocks sodium channels in neuronal cell membrane - reducing transmission of pain. I read recent Thread about Sodium Channel research.
Ketamine is on the WHO Essential Medicines list it is so versatile and powerful.

Dave.

Here's the above Thread:
http://neurotalk.psychcentral.com/thread218667.html

Englishdave,

if you get lidocaine infusions every 4 weeks does that pain you are pain free for that long?

Also, ketamine infusion every 4-5 years, does that mean the relief lasts that long?
thanks

Canagirl,
Sorry, I am not making myself clear. My fault with my fuzzy brain.
I have my Lidocaine Infusions every 4 weeks and it reduces the pain from a 9 to a 4/5 for 2 to 3 weeks with gradual increase in levels as the weeks go by. I must point out that I also have chronic neuropathic facial pain, chronic TN and chronic cluster headaches. The first 2 are also dulled by the Lidocaine, suffering with the headaches just makes everything worse - like Depression.

The Ketamine I take I have been on for 4-5 years. It is an Oral Solution and I take 30-60mg 4 times a day.

This combination gets me from month to month, and I am an extreme case. I have friends at the Pain Clinic who lead almost normal lives because of their Infusions.

Dave.

Hey, I just came across this article this morning, and thought it might be helpful to you, as you seek options for treating your pain. (It's kind of summary of the different drugs available, and what they can do for you.)

http://myelitis.org/symptoms-conditi...ropathic-pain/

That is a really great article and does a wonderful job of explaining the medication options and what can be expected. I am on Gabapentin and MS Contin ( time release morphine ) and find it very effective. I had a bad reaction to an antidepressant, serious visual disturbances, so we dropped that but may explore it again as things progress.

Not having a solid diagnosis would add immeasurably to the fear and stress for me. Canagirl, I am sure you have answered this but are you scheduled for a skin biopsy?

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Not having a solid diagnosis would add immeasurably to the fear and stress for me. Canagirl, I am sure you have answered this but are you scheduled for a skin biopsy?[/QUOTE]

Yes, I have one on May 20. However, I believe I have small fiber and now as a result of acupuncture MANY large fibers damaged as well.