This is a name I plan on learning a lot more about.
My Rheumatologist brought this name up to me on the 4th of July. We were talking about my recent fall from numbness in my legs, the constant Neuropathy in my hands and feet, the vision problems, tremors in my hands, my legs, my head bobbing back and forth, headaches electricity running through my body and not to mention a bunch of Neurology tests that point to Nada!
My Rheumatologist, who by the way is far more intelligent than I and most Dr.'s I have met brought up some recent research by Betty Diamond in the last 5 years where some Antibodies that (not sure if only Lupus Patients or all people) my guess Lupus patients have that are supposedly crossing a blood - brain barrier. Up until her recent research this was thought to be impossible.
He feels that even though my inflammation markers in my brain and central nervous system are normal, there is a good chance my Lupus anti-bodies have crossed the barrier. What that means, I don't know. As much as I would love to settle in and read all these research papers by here, I know that they are above my pay grade in comprehension.
What it means Medicine wise, not sure either. All I know is he has brought up Rituximab. I have an appointment on the 21st with Dr. White again. to talk about what this means further.
I'm all about the research. There is hope. I believe that. There is.
ReplyDeleteYes there is always Hope. I had thought that when Benlysta was approved by the FDA this last March, there would be "hope" for all those who suffer from lupus.. I only 'hope" that more people with Lupus bring up Benlysta, and not let the cost detour them from asking.. Most all infusion used for Lupus cost just as much, if not more then Benlysta. They also have a patient assistance program, for those who's ins will not cover it all. I understand MANY Dr's are willing to take a write off, in order to get their patients on the new Benlysta..
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