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

Nancy, you have been through so much. It is amazing that you are able to cope with it all, and keep on going. It does seem as though there would have to be a genetic factor involved.
I know you must be encouraged by the fact that the Imuran and the Rituxan have brought about some relief.
Keep posting! If nothing else, we can give you a shoulder to cry on and a listening ear.
:hug: :hug: :hug:

I know what you mean about not being
 

able to sweat, as I have CIDP and the IVIG treatments are finally starting to really work [on it 3 years].

http://telemedicine.org/stamford.htm This is a site I found that explains how the conditions we have affect that sweating and other issues. Tho it's aimed at diabetic neuropathies, to me any good explanation that's got cross-over is a plain old good thing to have. [It also talks about those hair issues a bit as well] Oh the 'things' docs don't TELL us!

Hang in there, it sounds like you've got some docs working for and with you! It's a hard combo to find, just wish it didn't have to be THIS way?

:hug: for now - j