Janis, they are researching Fosamax for OI. Cool~! :-) Girlfriend you are in the know. :-) from the OI newsletter "Breakthrough" http://www.oif.org/Research2.htm >>>Thirty-nine researchers from laboratories throughout the USA, plus key investigators from Canada and Ireland were invited to come to Chicago, IL and share their knowledge, results and current research questions. More than 20% of the researchers received OI Foundation funding during their early careers and almost a third of those present are members of the OI Foundation’s prestigious Medical Advisory Council. The meeting focused on 4 key areas: bisphosphonate therapy, ribozymes for gene therapy, transplantation and other novel approaches to therapy, and bone biology. • Discussion on bisphosphonate therapy focused on unresolved aspects of administering the drug to OI patients. What are the long term effects on growth and bone tissue? Is the response of long bone different from the response of vertebral bodies? If bisphosphonates are beneficial, when should they be started and how long should administration continue? Many answers may come from a double-blind study of Fosamax (an oral bisphosphonate) in children with OI being conducted by Shriners’ Hospitals and from controlled trials of bisphosphonate treatment in mouse models for OI. All agreed that bisphosphonate therapy does decrease bone pain. There are many new bisphosphonate formulations being tested now. Some of these are more potent and can be administered more quickly, with longer intervals between doses. <<<snip<<< ----- Original Message ----- From: "Turk McGee" <turkm.turkmcgee@verizon.net> To: <FOLKLORE-L@rootsweb.com> Sent: Friday, April 05, 2002 8:11 PM Subject: Re: [FOLKLORE FAMILY] My kinda fun Kaffie sweetie, one day about a month ago I was dead serious about why bother going on! I can't lift over 10 pounds and I have two grands that are more than double that. I couldn't cook, read, concentrate, nothing! Like why bother? I'm only comfortable now because I turned into a savage patient. Fix it or I'll KILL you!! If you are spazing, I'd ask for the neurotin. And the patchs. By gum they work! And I know how much the pins and screws object to being shaken around. *G* Got more than a few myself. Hey, want to have some fun? Let's fly somewhere!! I want to see us get through security. We'd set off every bell and whistle in the airport! LOL Oh, and don't metion soft bones! For that, get fosamax. It rebuilds bones. Another prescription. And take cod liver oil pills with the calcium. It absorbs more completely with the vitamin D in the diet. Just ask Doc Turk cause I'm doing the same thing. This stupid keyboard is sticking! Especially the nnn nn LMBO Makes for some funny spelling!! Turkles Kath wrote: > Janis, I can understand your euphoria. > I'm tickled they finally found something that works. > I'm a mess. I fractured 3 vertebrae when I was about twenty. Top <cervical>, middle, and bottom. (I never bothered to remember what number they are, but boy howdy, I can point at any given time to right where they are.) > With the right leg being so much shorter, (do to another fracture) it puts tremendous stress on my back. I wear a lift in my shoe, but it's > a Band-Aid approach at best. Now my bones have become soft and my spine is compressing. > Just when I thought it couldn't get worse. <G> > My back is in almost constant spasm. the moments when nothing hurts are rare. > Then with this knee deal, I'm about whipped. Of course it was my left leg, which was > pretty much my good leg up until then. <LOL> It started doing a crazy thing even before the fall though, > it will spasm and shake for 5 or 6 seconds, involuntarily out of the clear blue. Sometimes repeatedly. > It is happening more and more often and driving me up the wall. > Hurts like hell with the knee fracture and the cramping afterwards. > All that wire and pins and screws prefer to be left alone, not shaken violently. Sleep~? Fahgedahbowdit~! > I have always been fairly stoic where pain is involved and have a pretty high threshold, but I am about done with > this day in day out ordeal. Uncle all ready for Pete's sake. > There has to be something that can be done.......some relief ?? > Didn't mean to rant. > Looking forward to seeing you around more Turklet. :-) > {{{{{{{{{{{{{{{{{Janis}}}}}}}}}}}}}} > kaffie ==== FOLKLORE Mailing List ==== "Folklore Family" Listresses Missi Richiele3@aol.com & Kath Mzmouser@attbi.com »§«:*´`³¤³´´`*:»§«:*´`³¤³´`*:»§«:*´`³¤³´´`*:»§«:*´`³¤³´`*:»§«