One In A Million (Or 50,000 Anyway.)

At nineteen years of age, I have the displeasure of being one of the few to have this rare disease. From a young age, I've had joint pain, numerous X-Rays and when I was eighteen, I woke up to pain that hasn't gone away since.

Upon a visit to my primary doctor, I was given an order to have x-rays yet again and low and behold, multiple bones held "polka dotted" lesions. I was referred to an orthopedic surgeon and had an MRI. Given the fact I was supposed to have a contrast MRI and didn't do the contrast due to a phobia of needles, Only one of two sets were completed. At my follow up, the doctor stated that they had only seen one other patient with such radiographic findings. The ortho offered no solution to what my condition was and used various words, bone islands, bone cysts, which the latter made no sense due to the fact that she stated they were not fluid filled and that there was no visible reason for me to be in pain.

Another opinion was given, since the findings were so clear, that I had OPK.  I looked it up, and read the bits of research that I could find. The X-Ray and MRI findings looked 100% the same as my own. 

No real aid has been given to me, I primarily brace my wrist and carry on with my life as best I can. When I was seventeen, I was actively in martial arts, playing the flute, and learning how to play the violin. Now, I can't enjoy it. I stay in as much as I can, often my pain is worse after being active. The pain often keeps me up at night. 

Prior to January 2012, I would get random times where my wrist and other joints would ache, now it is a constant pain.

I feel older than my age. 

I'll be updating this later.
FreeThinker93 FreeThinker93
22-25, F
1 Response Jun 24, 2013

How are you dealing with your pain and how have you found a doctor that is knowledgable and able to help?