Health ? Polyarteritis Nodosa

[Your Name <aopatwa@erols.com>]

Dear LM_Netters,
        Since your collective abilities seem to encompass everything, I am
asking for your help with a personal health problem.
        I am an elementary Media Specialist who was diagnosed in January as
having Polyarteritis Nodosa, a rare autoimmune disease that is causing
the arteries in my abdomen to knot up and slow or stop the blood flow to
most everything between my diaphragm and my hips. Many people die within
a year of diagnosis and only 50 % make it to the 5 year mark. I think I
may be one of the lucky ones since we seem to have caught it really
early, before severe damage was done and very high doses of prednisone
seem to be smoothing things out and increasing the blood flow to the
organs.
        My problem. As soon as I got home from the hospital I hit the net and I
have gone to the National Library of Medicine, so I have a fairly decent
idea of the range of possible responses, treatment, etc, although I am
always ready to read more. At this point, I have 4 Western doctors, a
Chinese herbalist, an accupuncturist, a biofeedback teacher, a
psychologist, and a pretty good support group from school, church, and
the neighborhood. What I don't have, and can't seem to find, is anyone
else with the disease.
        Have any of you ever had or known someone with Polyarteritis Nodosa who
might be willing to communicate with me? I have so many questions for
which my doctors, having never had it, can only give me textbook
answers.
        Actually I'd love to have any ideas or any information to do with the
disease.
        Thanks for any help you might have to offer. It will be greatly
appreciated.

Pat Wang
12120 Gray Star Way
Columbia, MD  21044

aopatwa@erols.com