After dealing with PN for a couple of years now, I finally have found the right doctors to aggressively persue the reason for this devastating condition. I thought that I was going to be classified as one of the appx. 25% for whom there is no known cause, and that I would just like so many others here, deal with this condition for the rest of my life.
My neurologist that diagnosed the PN in the first place, went a step further, and ran some wierd blood tests. From those test results, he scheduled me an appointment with a Hematologist for further study. The hematologist ran a multitude of other blood tests, and a bone marrow biopsy as well. From these results, he diagnosed me with what is called "Waldenstroms Syndrone" which is a condition exibited by a very large IG "M" count. Basically, a mutated cell, which tends to reproduce, but not die out like other cells. This one has build up an enormous amount of itself, (normal = 230, mine=6,500 per some measurement of blood. It's a form of lymphoma. So, now we know, I have blood cancer. As it turns out, about 6 years ago, a new drug called Rituxan was developed to combat non-Hodgkins lymphoma. It works as well combating what I have. According to the info I have found, this drug finds the mutated cells, wraps itself around them, and the bodies immune system sees this as an invader, and destroys the cell. The treatment is given intravenously, and takes from 4 to 5 hours for the first regimen, and thereafter, only 1 1/2 to 2 hours, depending on how fast the body can assimilate the drug. There are from 4 to 6 sessions required.

I heard last night, on the Fox network, in an interview with former presidential candidate Fred Thompson, that he has had the same condition appear in his life, and was given the same treatment for it. His lymphoma is in remission as of this date. So, I am hopeful.

Hopefully, this info may be helpful to others who are seeking answers to PN

Gyrene im glad that you found out about this and are going to be getting the appropriate treatment. I hope your PN also starts to reverse as these M cells are knocked out.

I'm glad you figured it out.
Good luck with your treatment, I hope it works well and your cancer goes into remission.

--through autoimmune molecular mimicry mechanisms.

See:

http://neuromuscular.wustl.edu/antib...tm#waldenstrom

Many thanks to all who posted replies. It's a great feeling to know that you're not in this pirougue (boat) alone.

Does anybody know if this problem, (NP) is genetic? My 45 year old son has a problem with itching hands often. I have not found any connection, but I told him to get checked. I don't want him to go through what I've already been.


Thanks again to all.

I am sorry for all you are going through and just wanted to send thoughts and hope the treatment works to put you in remission too. As for your son and it being genetic I don't know but maybe ask the doctor who is going to do the procedure too.