Oh thank you Marie for giving me more details so I understand better what you're going through.

The Immco test has been around for only a year, maybe two...certainly NOT mainstream yet. And the jury is still out on the accuracy, but many people are optimistic that is offers early Dx by looking at different markers. The big hospitals (Johns Hopkins, for one) doesn't use it and my neuro from there told me Immco hasn't done any clinical studies for the test. That doesn't mean it isn't accurate...just that it hasn't finish some studies yet. I'm always happy to hear of more testing coming out for Sjogren's as the SSA & SSB markers are NOT all that accurate either with 40% of patients WITH Sjogren's will show negative on those markers...and this is confirmed by that same neuro at Hopkins!

Your neuro isn't 100% correct about the lip biopsy and 'missing' the diseases glands. A good doctor (usually an oral surgeon or ENT) performing the test (not a neuro, by the way) always takes 6-8 samples to ensure they get a complete study and include any diseased tissues. The biggest problem with lip biopsies is the lack of proper samples taken and an inexperienced pathologist reading it. So you & your neuro should make sure of the doctors involved in the procedure, that they are competent.

It is best to just focus on where you are at NOW, not a permanent situation down the road (which may never happen). I was talking in the means of not hearing that anything had been done for you after YEARS and without treatment, permanent damage can occur. I am relieved to know that you have been offered numerous treatments, but sad to hear they didn't work or SE too difficult to handle. Yes, IVIG will treat the condition vs the pain meds to treat the symptoms. If you don't have a cause identified, then sometimes you have to treat the symptoms...because you don't know what the cause is to treat that. Steroids are an option you should consider...JUST to see if the neuropathy is inflammatory based. A short course will let you know within days if it will help. They may be able to use the new Immco test to get approval for IVIG. I know it can be scary but it really is well tolerated by most people. All meds have SE and IVIG does too. I put the link here from another thread in which I discuss the IVIG treatment itself (and SE's). Hopefully it will help you understand the procedure. The entire thread is full of information, but post #15 is where is describe the treat itself and SE's.

http://neurotalk.psychcentral.com/thread229739-2.html

I too struggled with pain for many years (I've had this for 19 years) and took all the meds you listed...and then some others. I now take narcotic pain meds. My pain mgmt doctor told me that pain patches (Fentanyl, specifically) works great for nerve pain and he is right!! It really helps more than anything else I've tried. It's not great for joint pain but I take some thing else for that. You might want to discuss other pain med options with your PM doctor. It's a difficult decision to make the step to narcotics, but it can be done slowly and in lower doses. I will tell you that it has given me the 'function' back that I lacked for many years. Just a thought to consider.

Hope this helps.