Name of patient : Angel
Email address (optional) : angel80911@live.com
Adult: 22 years old
Location : Bronx , NY
Area(s) of body affected: Left ankle/ Entire left tibia, fibula
Personal History:
I've been diagnosed with melorheostosis since I think 9 or 10 years old. For most of my life up until May of 2016 I've been perfectly capable of living life normally and participating in its activities. I've always had pains and lack of flexibility/stability specifically in my left ankle but nothing restricting my daily activities, but as of today Nov., 2016 I've had to quit my job, stop all activities and have been hospitalized about 13 times in the past 3 months due to the unfathomable pain I experience on a daily basis. I literally get pains all throughout my body whether I'm sitting or standing but the pain is minor with less activity. It feels like sharp aching throbbing pains all throughout my body from my shoulders hands wrist knees ankles back you name it and I have pain there. I've seen 2 specialists Rhuemo and nerve who all say the same thing "sorry, I don't think this is a problem I can help with" before referring to the next specialist. I've had X-rays and MRI's done on me showing multiple sightings of bone thickening. My primary has prescribed tramadol for pain, meloxicam as an anti inflammatory, gabapentin for nerve pain and tylenol for pain again. All of which have had no effect even with long term use but I continue the treatment to not be accused of not trying. The only medication that has found me any relief unfortunately is the narcotic drug percocet or morphine. When I am not taking percocet I'm taking all the other meds and waiting patiently in pain for my next appointment. Recently after an appointment with a pain management nurse I realized how hopeless my road for help was as I read her notes on me, stating that my pains were too inconsistent and that I seemed very focused on only obtaining narcotics and to not assume my pains were being caused by melorheostosis, basically calling me a liar and an addict which I am not. Some of my days are better then others in the sense that I'm not being deprived of sleep but for the most part I feel as though I'm experiencing the worst part of this disease.
Comments : I came here not just to tell a story but to reach out to any one who might have gotten as bad as me or for anyone who might have any suggestions that can help me because so far everything's been going down hill and I cant stop it. I wanna be the old me who could work out, play sports, stay out with friends, work for crying out loud, but so far I cant so please any all help would be great.