[Nancy D Stephens]

Hi. My name is Nancy and I have been dealing with pain/neuro problems for 19 years. I initially started with trigeminal neuralgia-and was told bymy neurologist I was crazy. In 1991 I was diagnosed with a lupus-like autoimmune dieases. In 1995 I was diagnosed with a blood clotting disorder which appears to be the major cause of the trigeminal neuralgia because once I became adjusted on coumadin 90% of the neuralgia was gone. Then In 2000 I was diagnosed with lymphocytic vasculitis and non-hodgkins lymphoma 3 months after. I survived the chemol. In 2004 Thevasculitis came back and 3 weeks later I was in respiratory failure and on a ventilator for a short time. I was 54 at the time. The vasculitis isstill active and more neuro problems developing: severe sleep-wake cycle disturbances (sometimes awake 54hours with only 3 hrs sleep), unable to tolerate any temperature above60 degrees (I wear a t-shirt when the heat is down to 60's and my husband is freezing--I cant wear wool any longer--rarely wear a coat, even when below 30 degrees, constantly thirsty and urinating and my skin on hands appears dehydrated (skin stays pinched up). Anyone else out there with autoimmune problems manifesting this way? Also, have been severely hypoxic (low pulse oxygens low as 50's) which have required oxygen 24/7 withno apparent lung problems. Hypoxia diagnosed as central. A trial on Imuran and then 4 weeks of rituxan IV therapy have eliminated daytime oxygen use. Only wear O2 at night now. Help. Also still covered with vasculitis. Nancy Feel free to e-mail me at nancydstephens@yahoo.com if any of this is familiar. Thanks

[Chemar]

welcome to NeuroTalk, Nancy