My Misery

I am 26 years old and have been diagnosed with PVNS in my left hip for the last 5 years. I remember the symptoms started back when I was 14 years old. I had my first synovectomy in 2005 at the age of 21 and my second at age 24. I reached a point after my last surgery that there were nomore treatment options available. I did physical thjerapy for awhile and water therapy but it just wasn't helping. I have three sons who don't have a mom who can run and jump with them or even take a walk around the block with them. They siffer as much, if not more than I do because they can't help me. I recently started Gleevec which is supposed to get rid of the tumors and such. Its a form of chemo in a pill. I sure hope it turns out being worth it because I am even more useless than before the pills. I have narcolepsy but these pills make my sleepiness ten times worse. I am also nauseated most of the time and too weak to move. I can't wait for some improvement in my life somewhere!
brighteyez116 brighteyez116
26-30, F
2 Responses Aug 2, 2010

Have you noticed any improvement from the use of Gleevec? I have a friend who might be about to start treatment with that same drug, and she is 26 as well. Her symptoms of PVNS started when she was 14 or 15 also. I pray you begin to improve soon! From reading your statement, I'm sure your 3 sons are blessed to have a mom that cares about them so much!

Hi, I also have pvns on the left hip. It´s really boring couldn't jump and run and other things we wish, i have 19 years old, and i'm from Brazil! I really expect you'll be better.