I have been a part of the PAN group for some time now. I'm sorry for not introducing myself before now. I did not because I was overwhelmed by the illness and I was...to be honest..afraid to jump into the fray.
Everyone seemed to know so much and I didn't know what I could do but learn. But I learned more about this disease and how to deal with it, what questions to ask my doctors, and how to move on with my life.
I have been dealing with (Classic) PAN since June of 2001 or so it is believed. My formal diagnosis came this past June (02)--one year later.
On a business trip abroad in June of '01, something I ate or drank got me sick enough that I ended up with prostatis, epididimyis, and erethema nodosa on my legs. This is all how it all started. The docs are very guarded whether this may/may not have been the trigger to my PAN.
I believe it did. Before it, I was an avid sports/gym fanatic and never had anything serious beyond a hernia when I was 3..after that trip, the long nightmare began and life hasn't been the same.
I spent that long period--June through this past May, battling what was happening with varied diagnosis--Reiters Disease, non-specific myalgia, to Reflect Sympathetic Dystrophy. I had nerve conduction tests---which proved nothing. I complained to my doctor constantly about the pain and weakness...but it fell on deaf ears so I lived on pain killers and zoloft ---I think the rheumy believed I was imagining things.
I learned to dislike Dorothy Hamil because I was popping Vioxx like Tic Tac mints to zero effect and seeing her skate around on one a day seemed beyond me. For so many months, every morning I was greeted with awful pain. I barely could get down stairs or roll out of bed. I dreaded going to sleep at night because I knew how I would feel in the morning.
It was always worse in the morning. I felt like a bat was taken to my body--(my legs and arms felt so bruised)--while I was sleeping. I gradually lost my ability to walk but a few blocks before the pain in my feet and weakness in my legs would stop me in my tracks.
After being treated with nerve blocks that did nothing to stop my pain, I was admitted to the hospital in May after a vascular surgeon could not feel pulses in my feet. An arteriorgram was performed and I was told I would likely lose my right, if not both my legs. I spent almost three weeks in the hospital and they were not sure what was happening.
I took Coumadin and I was on 1,000 mgs. of morphine, prednisone was started... I was transferred to Baltimore and I'm here today with both my legs and my life. I got back to work in September after a few months holed up in my home. I am presently auto amputating--as a result of the PAN--my right pinky toe and still can only walk but a few blocks. I have worked my way down to 5 mgs of prednisone, dealing with blood pressure issues, and my weight is SLOWLY reducing (the subsequent stretch marks now bar any beach trips. )
PAN has taught me some things. One, value your family, friends and colleagues. Without the I never would have made it through this.
Two, never apologize for how you are feeling and get answers to your questions. Three, never be satisfied with guess work. I spent a year of countless visits of 5 minutes and having what was happening to me trivialized and it nearly cost me my legs and perhaps my life. Remember, there has to be someone at the bottom of his or her medical school class.
Thanks to everyone for being there for me during the last 10 months and for being an inspiration.
With Sincere Thanks and Best Wishes,
Tim in Washington D.C. (PAN'02)