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-   -   polyostotic fiberous dsyplasia skull (http://www.healthboards.com/boards/rare-disorders/934216-polyostotic-fiberous-dsyplasia-skull.html)

101st soilder 01-06-2013 04:07 PM

polyostotic fiberous dsyplasia skull
 
I am a 49 year old man that has been diagnosed with polyostotic fiberous dsyplasia of the skull and body. They said that I was born with this disease, they confirmed it in my ct scans, mri scans, bone scan, they preformed a biopsy on me, which confirmed it as well. The biopsy of the skull made my pain levels go way high, increasing the pounding, throbbing, dizzyness, off-balanceness, with stabbing sensations in my left orbit to the right orbit above the eyes and through the sinus, my left eye has incredible stabbing pains, my ears have become cloudy, but become intensified 24 hours a day from loud noise and lots of people talking at once, must wear ear plugs were ever I go, noises will cause me to have massive pounding and all of these other effects. My head pounds so hard that I very seldom get sleep, going 3 to 4 days in a row without sleep per week, I try to lay in bed praying my head will let me sleep. When I finally get to sleep, I still can't sleep long, because when I lay on my head against a pillow the pressure of my head upon the pillow makes me wake up the next day with massive pounding that won't quit for nothing. Its been 11 months with every single minute of massive head pain and not alot of answers, except there is no cure! MUST START INFUSIONS NOW WITH HIGH DOSAGES FOR A YEAR STARTING NEXT WEEK, DOES ANYONE KNOW HOW I WILL FEEL ON THIS, HAVE MANY QUESTIONS. Please help, thank you.

luca689 01-08-2013 08:36 AM

Re: polyostotic fiberous dsyplasia skull
 
What are your infusions to be?


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