Safety release please
 

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

Hugs. I can relate and hear you. I know starting over with a new doc and new issues popping up and a flare is a lot to handle. I am experiencing that as well. Maybe this new doc can really help you and will be a gift. I know many here take high doses of vitamins but maybe you should check with your doc cause something sounds off unless your body is adjusting. I know it is hard cause many are clueless about that. Maybe post on the vitamin section and when Mrs D comes back she can offer. Hugs and many thoughts.

Alkmyst,
I go to Hopkins and my doc is in ill health (Griffin, head of the dept)
so I now see his PA - Tami.
She's been his PA for 6 years, and in my opinion has more on the ball
than most of the newer neuros that you might be 'assigned' to.
If you can, see if you can get on her schedule.
(BTW, she has a nice sense of humor & is very professional)