November 19, 2012

A name for my other Mysterious Disease?

I know it's been a long time since I've blogged.  I was quite busy planning my daughter's wedding. It was a good distraction. The wedding was beautiful and the couple is very happy.
My "Lyme " pain persisted and the herbs did not work. I tried to ignore it and threw lots of pain killers and muscle relaxers at it. The warm weather moved in and I felt pretty good.  In August I needed a bone graft for a tooth implant. An infection eroded the bone in my jaw.  For 2 1/2 weeks post- op I was symptom free for the first time in like FOREVER!  I had no idea why but I was so incredibly excited. That excitement soon turned into disappointment when I figured out that the oral surgeon had given me dexadron.  Dexadron is a steroid. Steroid's reduce inflammation.  All my inflammation was gone, at least temporarily. But when the steroid wore off, the pain was back with a VENGEANCE!  I couldn't move my shoulder or elbow. At first, I wasn't thinking Lyme.  Lyme does not tend to stay to one joint. It tends to jump around.  The pain persisted and grew in intensity. Not even my pain meds were working.  I went to see my pain doctor. After talking and crying to him, he said he really felt I had EDS ( ELHERS DANLOS SYNDROME). It would explain a lot of the problems I've had all my life. All the crazy undiagnosed signs and symptoms. It's a genetic disorder. No surprise there. The collagen (the stuff that gives skin and tissues its elasticity and strength)) does not form properly. This explains the tethered spinal cord, the intestinal bleeding, the enormous amount of scar tissue found during my brain and spinal surgeries, my pre-mature old looking hands and a host of other problems like my stomach and esophagus issues.  BUT, my doc said it does not explain the severity of my pain in the joints. He felt the pain was too severe for EDS. So he was thinking that perhaps it's food sensitivity.  He sent out blood work (ALCAT) for testing.  Well, I almost started to cry when the results came back!!!! I actually didn't cry, but I wined for days!!!! I'm still whining.

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