I've been offline for quite some time and was going to write a somewhat upbeat note that I might be getting a handle on dealing w/ my PN but then it has gotten the best of me again, something I know everyone has experienced at some time.

I'd been back to Hopkins a while ago only to discover that my neuro is taking a faculty appointment in Texas so I've got to start the process there over w/ a new doc. Fortunately he was able to fit me in on the last day he saw patients so I had the benefit of seeing him for the last time.

I'd added some megodoses of B vitamins to the gemish of supplements and meds that I was taking and the horrible coldness in my fingers seemed to be diminished somewhat. Interestingly, however, for the horrible cold pain in my feet and toes - now nothing I do gives me any relief at all from that remaining cold. The last few days have been pretty bad w/ today a combo of nausea and profuse sweating from the pain - a mix of freezing cold and burning simultaneously - sounds nutty but it's real. I checked the vitamin doses, especially B6 and I'm well below the g/kg/day doses required to precipitate or exacerbate PN so I think I'm ok there.

Still struggle w/ the muscle imbalance in the toes such that all of the joints feel like they are slowly breaking - the tendons on the big toes are already pulled out of the bony groves on the tops of my feet so I can no longer straighten them at all. I mentioned this to my neuro at UPenn last week and while he sympathized he didn't have much to offer me - at times this can be as bad as the cold and like the cold it never eases up. I've been through PT several times, tried epsom salt soaks, done/do stretching exercises but all to no avail - don't seem to be able to slow this process down to any extent.

I just reread this and I'll quit bellyaching for now - just wanted to blow off some steam, or in my case some cold.
alkymst