Name :   Corey Richard Weber 

E-mail :

Adult:   45 years old

Location:  Spring Valley, CA

Area(s) affected:   Long bone of right arm

Personal History:

For several years prior to initially being diagnosed in 2006, I was having frequent pain in my right arm/shoulder area. I always put up with the pain and moving on.  In 2006, my job was to enter data into a computer and utilize many dispatcher office equipment. At this time, my right wrist was experiencing pain similar to Carpal Tunnel Syndrome so I went to my doctor who sent me for x-rays and follow up with a sports medicine doctor in Temecula, CA.
Upon my specialist seeing my x-rays, he found the Melorheostosis and stated to me that he had only witnessed this disease twice in his career. Once in a magazine and now mine and requested he be allowed to use my x-ray to train his interns.
Nothing was done for me as far as information, pain or treatment of any kind.
Initially I was devastated but eventually I let it go because I could find no information at that time.
In October of 2009 I went to a rheumatologist who was testing me for Psoriotic Arthritis (none at this time) and confirmed the diagnosis of Melorheostosis but stated to me "You wont die from it." Nothing more was done or said after that.
This is where I stand now. I have county medical insurance that may or may not (at their discretion) cover this condition. On top of all this, I have Diabetes, Psoriasis, bi-polar disorder, and other psychiatric conditions.
I have pain in the entire right side of my body daily, from my rotator cuff down to my calf. At times the left side does become painful in the pelvic and shoulder areas too. Because of the way I was raised, I usually don't complain to anyone of the pains I experience and just deal with it. However, this pain is increasingly progressing to where I can hardly bear it. When I wake in the mornings my right hand swells up like a balloon and hurts on every movement.
I remember when I was an adolescent I had a peculiar lump on my right wrist mirroring the lump that is natural on the right hand side of the wrist. I went to my family doctor who prescribed some ointment and it went away. Never thought of it again, but looking back along with this new information I feel it may be connected to my condition. I really don't know. All I know is that I am terrified now and don't know where to turn.

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