May have peripheral neuropathy due to polycythemia vera
 

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

Welcome TedM. :Wave-Hello:

B-12 number
 

Not familiar w/ your condition but will say first rattle out of the box that all here know their b-12 number. Long term Metformin(glucose med) blocks absorbsion from food in some. 400 is low end of scale. Ask your Dr. to test for this next blood test. Good Luck, Ken in Texas.

Polycythemia
 

I have had polycythemia since 2006. I now have peripheral neuropathy for more than a year. My b12 got critically low. I try to tell my neurologist this but he won't listen. Thinks it autoimmune or alcohol. I have much of the same symptoms that seem to get worse, not better. I even take two different b12 supplements twice a day. Any suggestions or opinions is welcome. I've had to file for disability due to the worsening symptoms. Depression is starting to take its toll on me.

Hi, T $porter1

How was your PN diagnosed? Did you have the EMG tests from a neurologist.

You can have RX for one of the drugs that helps with pain/discomfort.

I can say, in my experience (and I'm NOT a medical professional) it is very unlikely that PN can be treated or reversed in most cases.

Your neurologist can test for a variety of possible causes and suggest a variety of treatments, based on the tests.

Peripheral neuropathy associated with polycythemia vera | Request PDF

Sensomotor axonal peripheral neuropathy as a first complication of polycythemia rubra vera: A report of 3 cases

I can't find much about how Polycythemia is treated, but I'm sure you know.

Check with your physicians to gain a clear picture of what can be done.

Depression is a hallmark of PN. So sorry.

Regards, ElaineD