I'm feeling as if I've hit the wall as to what to do next, and can feel despair lurking...

My recent visit to Hopkins was ultimately unfulfilling. I suffer from full body burning which, different from many here, manifests everywhere except my hands and feet. The doctor at Hopkins gave me a paper authored by Dr. Ken Gorson (sorry, can't get the complete link, but it's titled "Non-length small fibre neuropathy/ganglionopathy" in the Journal of Neurology, Neurosurgury and Psychiatry2008:79:163-169), which establishes that this form of PN isn't well recognized, and that 'the pattern of symetric, non-length dependent neuropathic pain...suggests a selective disorder of the dorsal ganglia cells subserving small nerve fibres.' The paper is worth reading (if a little boring) in confirming what you already know if this is your problem.

And that's what my doctor kept saying, 'that's you'. Well, no kidding. I knew this. But there was a disconnect from what I was being told to what was on the page. The doctor said that many times the SFN will grow back, and that with time things will improve. Yet the paper states that a lot of these people in this study were refractory to treatment. This was not uplifting to read.

Since, no improvement has remotely occured (over six months now). Indeed, things have regressed. My phone conversation with my Hopkins doctor this week brings us to the end of what he can do.

It's amazing to me, and ****** me off, how limited these guy are though. I've been to UCLA and now Hopkins, and nothing. They rotely go through the list of medications, and tests, after I demand them, and send you on your way. And it seems no one has been up on the most recent research. Just empty.

So now after voluminous blood tests, multiple MRI/a's of my brain and spine, multiple EMG/NCV tests, an LP, lumbar sympathetic and stellate ganglion sympathetic nerve blocks, positive skin biopsy and a one-day ketamine infusion (I realized that this was the edge of the envelope of current treatments, and figured let's go there as quick as possible), I'm exactly where I started a year ago. A lost year. The only improvement is that you get used to living with the pain. And I sit here obsessing, what test did I miss, what test needs still be done? There has to be an answer, or rather a better answer, than I've received thus far.

My current doctor is a neurosurgeon who was a researcher at UCSF, and we've been discussing the research into NA channel blockers, but any non-intrathecal pump drug is a ways off it seems. I've just started on Mexiletine. This after cycling through Neurontin, Cymbalta, and taking 600mg a day of Lyrica along with Baclofen, but the pain continues, with only Tramadol relieving the pain a little, but I try, as much as I can, not to take the plunge.

So I'm feling at a loss.

MrsD, I'm a long time reader of your posts and have been taking ALA, Acetyyl L-Carnitine. along with magnesium and taurine (more recent additions) and B-12 every day as per your erudite reports. But it's just amazing to me how little we know medically about this nonsense - rather horror - and it's not acceptable. It really isn't.

Finaly, my pain doctor here in LA is close with Dr. Anne Oaklander at Mass General and suggests I see her. Anyone with experiences there? Any reasons to go see another doctor, however well regarded, who will go through their limited repertoire which I, an everybody at this forum, already knows?

Thanks for getting through my rambling.

-- Dennis