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   Please advise me of what to expect..... (Osteoporosis board)

27th May 2005
I know the feeling believe me. I am a 41 year old male with severe case as well. After a car accident two years prior I assumed it was from that and a bad chiropractor I seen for a wile. For two years my back kept popping and hurting so severely. Finally I went in to the doc and found I had shrunk 4 ½ inches in 2 years. New MRI’s found 10 compressed vertebrae fractures missing 40 to 50% of each bone. They also found multiple pinched main root nerves and discs as a result. I was tested for everything from hormones to Cushing’s. They doubted the odds that the last thing I was tested for would be it either. They said the odds were better of me winning a lottery than having a rare incurable disease called Systemic Mastocytosis. Bone marrow biopsy tests confirmed it. Treatments have been rough. One of the Chemo treatments they are using to BUILD BONE MASS seams to be working GREAT!!! They took me off Fosamax and put me on an I.V. bone cancer med called Aredia. I think it’s working great because I can even sneeze or cough and sleep in bed without breaking anything. Life is great! LOL!!! I swear I feel so sorry for any of you here who suffer with this. I never understood just how important bone mass was and how painful it could be to have them crumble this way. Have they ever found a definate cause for yours? Two years prior I had repeated inflamation and swelling under my rib cage. They treated me like a Hypochondriac. I later found that it is common to swell and feel pain in front when your main nerves are being pinched in the back. They hurt or swell at the end of the root not by the spine where the pinch is. I remember reading something in your posts like the doc said I had sh*&y bones, but has he given you a definate reason WHY!!!!!!???? I also thought you said something about a Hysterectomy. Hormones definatly CAN cause it but you need a DEFINATE REASON not just REPAIRS ALL THE TIME!!!! I hope to here more from you all.

John
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