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Old 04-23-2007, 02:10 AM
Nancy D Stephens Nancy D Stephens is offline
Junior Member
 
Join Date: Apr 2007
Posts: 11
15 yr Member
Nancy D Stephens Nancy D Stephens is offline
Junior Member
 
Join Date: Apr 2007
Posts: 11
15 yr Member
Default Mixed Connective Tissue Disorder

Hi. My name is Nancy and I first got ill in 1988 with the following sequence: bilateral trigeminal neuralgia, profound fatigue. 1991--Cleveland Clinic--Dx with Lupus like illness due to labs (anticardiolipin antibodies, elevated SED rate and CRP, unusual complement factors, decreased lymphocytes. 1995--avascular osteonecrosis of the left lower jaw due to clotting disorder (Lp(a), FACTOR XI, Homocyctein gene), started on coumadin. 2000--vasculitis. 2001--stage 4 non-hodgkins b cell lymphoma--6 mos chemo. 2004--vasculitis back. 2004--respiratory arrest--put on ventilator for short time--intubated at home on my bed (the emt's cut off my good cold water creek pajammas!)--also in renal and liver failure. 2005--on oxygen 24/7 due to central apnea due to autoimmune inflammatory probs--closest diagnosis. Fall of 2006 and 3/2007--started Imuran and apnea improved. Then started Rituxan IV (once a week times 4 wks)--eliminated need for daytime Oxygen. However still dealing with severe vascular headaches, horrible circadian rhythm disturbances, constant thirst and urination--not blood sugar,inability to sweat except for my scalp--only place left where I have any hair (not a pretty picture). Will see neurologist soon and geneticist. Out of 5 siblings, a brother (56) an a sister (48) died in 2005. My GP feels like there has to be a genetic connection. Maternal uncle died at 56. Mother died at 67. I am 57 so I guess I'm getting a little concerned. On disability retirement as registered dietitian from VA medical center since 1992. Broke my heart. And I had 3 little kids who don't remember me when I could work and hand wall paper. Such is life. Nancy Stephens
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