Finally, a diagnosis
 

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:grouphug:

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.

Waldenstrom's is a known producer of neuropathy--
 

--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.:hug:

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.

There are certainly hereditary neuropathies--
 

--although I do not not of a genetic tendency towards the particular condition of Waldenstrom's.

Then again, the knowledge of many of these conditions is not yet very far advanced . . .

May we know what led the doctor to the diagnosis and the bone marrow biopsy?

Did they do a protein electrophoresis? Did something show up in your blood panel test?

thanks.

To Chamade
 

Yes, the neurologist did blood work, and came up with a problem with the level of the "M" protein. Seems the normal level should be somewhere around 230, and mine is over 6,500.
He sent me to a hematologist who actually diagnosed the condition as Waldenstrom's macroglobulinemia, or blood cancer.
Presently, I'm going in for a biopsy of a mass that has returned in the sinus cavity over my right eye. This condition existed some 9 years ago, and was removed by surgeon in New Orleans at the Ochsner Clinic. I didn't even know it had returned until the hematologist did a full body x-ray, and it showed up. I'm now at an ENT getting ready to remove it again. Then the hematologist will begin the Rituxan treatments to work on the "M" protein levels in the blood.
Sheesh, I can't keep the Doctors names straight anymore. I will say, however, that they are all running on full throtle trying to do me some good....Thank God
Reading the other posts in these pages, my heart goes out to all those who are enduring the same pain, and suffering, and believe me, I hear your frustration. Makes you want to load your shotgun before you head out to the clinic in the morning.
I was in the A/C business before retiring. I wonder just how many of these Drs. would accept the same kind of treatment if their A/C went out, and I didn't show up as expected?...HA ! Fat chance. :)

I have been having rituxan infusions for about three or four years - actually I had one on Monday, and have another one in a week. It is a monoclonal b antibody that depletes the B cells, which is why it is helpful to me as the B cells are involved in the development of autoantibodies (I have lupus). Rituxan is a man made antibody - half mouse and half human, which has caused some problems for me as I am allergic to mice. But most people do fine with it. There are now some newer fully humanised monoclonal antibodies which I think will ultimately replace rituxan altogether and won't have the same reaction problems. Rituxan has to be run slowly, especially at first, so they can monitor for reactions. Over time, particularly if you don't react, the infusion can be run faster, especially since there is a tendency for reactions to reduce over succession infusions. Unfortunately I still have to have my infusions run very slowly so I can tolerate it - often over 24 hours.

But, rituxan has been good for me, though it has done nothing for my PN, it has helped other parts of my lupus which has been really good.

Best of luck with your infusions, most people do very well on rituxan, i have just been unlucky

regards

raglet

Great that you have some sort of diagnosis
 

and that you kept at it until you got some answers!
Keeping your docs straight can be a challenge once you pass the dozen mark..I know from experience and can sympathize.
That biopsy will keep you on tinterhooks until the results are in, but then, be prepared for every single doc visit w/a notepad and pen as options will be put to you and it's gonna be up to you to learn about them and decide which ones are best for YOU. Be sure to ask, no seriously request a copy of the results and use the 'web' to learn as much as possible about the situation. I speak as a cancer survivor myself [w/an autoimmune neuropathy] and I've rarely had a doc get sticky about copies.
Hopefully, the biopsy will not be cancerous and more simply [HAH?] autoimmune of a different nature.
In the meantime, don't worry about the possibles yet. There are too many variations. Save the energy for the likely/definites and then research away!
Hang in there! - j

Raglet
 

Many thanks for your great input. And, my sincere prayers that your NP will take a turn for the better.
Which brings up a point that I have been pondering. Just today, on the national news, was a story about just how many people are turning to alternative medicine. The story stated that many are doing so for another form of pain management. As we all know, there are many diseases out there that leave the patient in chronic long term pain. Many of the people in the article spoke of such things as acupuncture, meditation, and many other forms of alternative medicine helping them immeasurably in their search for pain relief.
I was wondering if the same principle has ever been researched for the relief of the pain associated with PN.
If there are any out there who have done anything with alternative forms of medicine for PN, please feel free to share your information with us.

Thank you.

PS to Raglet: Love your avatar.:cool: