Originally Posted by TedM

I may have peripheral neuropathy due to my polycythemia vera dx in 1999. My feet have been numb and have tingled some for 4-5 or more years now, and the past week, this has moved up to my lower legs, starting at the knees. Up to now, my drs. have ignored this when I would give them these complaints, so I don't have a diagnosis.

I found an article abstract on nih that documented a study of PV people with peripheral neuropathy (PN?) and it said they mostly had sensory axonal polyneuropathy. Is this going to be bad for me? I looked up SAPN and it looked bad.

Does anyone know of any OTC substances I can use until I get a dx? BTW, I forgot to mention I am taking 3000-3600mg Neurontin daily. I got started at a pain clinic who gave it to me for a urologic discomfort I developed around the same time I got my PV (1999).

Sometimes, I even feel this numbness in my hands.

The past few days, if we go shopping, say to Costco, I develop a weakness in my lower legs that causes me to slow down and I have to apply more force to walk normally. Can this be controlled/reversed? I know these probably sound like naive questions, but until I learn about PN here and get a dx at my drs., I won't know much. I followed the forum on PV daily for a number of years and learned a lot. I still follow it from time to time (MPN-NET & MPD-SUPPORT).

This is my first post on NeuroTalk. Am I on the primary forum for PN?

When we got home from church today, I was able to put my shorts on by standing on one leg, putting one leg in, then the other, without support, so I'm not that bad. BTW, we live in California.

Regards,
Ted, 71yo, numbness in feet, ankles, and now lower legs; weakness in lower legs in the past week. No dx. Polycythemia vera 1999, Post-polycythemic myelofibrosis 2013, 10mg Jakafi 2x/day, 81mg aspirin 1x/day, 300 mg gabapentin 10-12x/day