Symptoms I had from wegeners, vasculitis

In spring 2004 I went to The Libby healing mineral health spa in Arkansas.  Months later I still had water in my ears and had to get ear tubes inserted to release the trapped water.   I thought it was from my visit to the mineral baths and at the time did not realize that this would be a symptom related to a much bigger problem.  When I met and spoke with other people who had wegeners, they also had to get the ear tubes. 

A year later I began to have pain in my left shoulder. It got so bad that eventually I could not lift my arm above shoulder height.  The MRI report indicated a small tear, and luckily my primary care doctor said he did not feel we should operate and that we would just watch it.  Finally after not using it and avoiding any lifting, it  began to heal.  Then the pain moved into my other shoulder.  I could not believe I had torn the other one too now.  I was thinking maybe it was stressed from compensating for the other shoulder.  My doctor did not put the pattern together yet at this point.  It was not until the pain traveled to my knee and then the other knee in 2006. 

In spring 2006 I was skiing in the Bavarian mountains in Germany.  Actually, I was making my way up to the resort with my ski boots on and by the time I hiked up the mountain from the car I was very exhausted.  I thought it was just the altitude.  My feet were very uncomfortable in my ski boots that I was wearing and thought they just didn't fit right.  I was so exhausted and my feet hurt so much that I ended up not skiing that day.  Then when we arrived by train in Paris, I could hardly manage pulling my suitcase to our hotel.  I was worn out and usually this was not a problem for me at all.  I thought, wow, good thing I went around the world when I was younger.  I really felt like I was getting older just being on the trip.  In retrospect, I was experiencing the exhaustion that is common with early symptoms of vasculitis.  Once home, the jet lag lasted for days.  In fact, I ended up calling it, "The jetlag I never recovered from"

By July of '06 I was sitting down in my garden more than I was actually gardening.  Normally I could work hours without stopping and not even take a break.  I was also feeling dizzy at times and it wasn't even the hottest part of the summer.  Meanwhile all summer long I had been experiencing what my primary care doctor called poly arthritis.   The problem came back in my shoulder and then went to the other one much quicker this time.  Then it had moved into my left knee and then the other knee.

Some other symptoms I had was sudden weight gain; I thought I gained it because I went on the spring trip to europe and it was from all the wonderful restaurants and pastry shops we went to.  Then just before I went into the hospital I began to quickly loose weight.  I was at 138 pounds in May and by christmas that year I went down to 107 pounds.  On and off all summer I had a runny nose which would just suddenly drip and I did not have a cold or any other symptoms that would cause my nose to run.

By August I had puffy stiff fingers and went back to my primary care doctor and then my knee was acting
up so bad he sent me to a rheumatologist.  When she took a chest x-ray I thought that was kind of strange since I told her it was my knee that was bothering me.  They called me right back and said I needed a cat scan which revealed I had infiltrates (bleeding) in my lungs.

By the time I went into the hospital I could hardly walk and was very exhausted.  My blood test said I was very anemic.   Once in the hospital, I began to spit up some blood and my sinus were very stuffy although I did not have a cold.  Weeks prior, my doctor thought I might have a sinus infection and I took augmentin to clear it up.  I just did not feel good and thought maybe the doctor was right, I had some kind of bug.