First off I want to thank all of you that have been thinking of us and praying for us. I really do appreciate it. we still don’t know a whole lot. It is still a toss up between lupus cns (central nervous system?) and MS. BUT, HE is sending me to Birmingham to a dr at UAB who is the best in the southeast for MS Patients. He is who they send difficult cases to he said. He said he hated to put me on the medication that is 15,000 yes that is THOUSAND a year without them ruling out the lupus causing this. BUT, I tested positive for all the tests they give for MS. I have a Rheumatologist (lupus dr) appt on May 6th for them to look at my tests, and they are tryin to get me into UAB in Birmingham to the MS dude asap.
THe way he explained it to us… my central nervous system, the mylar (?) (I think that is what he called it?) that insulates your nerves… is deteriorating. There is nothing they can do to FIX IT.. but they can slow down the degeneration of it. BUT depending on if the lupus is causing it… that would be a different medication than if it was MS. SO now you know .. what we know. PRetty much not much lol so we are now praying for getting into UAB pretty soon!
I DO KNOW I am exhausted. Physically and mentally so Im gonna go catch a nap.
THANK YOU ALL SO MUCH AGAIN.
love and hugs