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
16 comments:
Hang in there Nancy. I'm praying there is something that will stop the myelin deterioration!
Wouldn't it be great if it margaritas worked? I'd send you a barrel full!
Your one tough lady Nancy...I'm thinking of you and praying for you..your scrapbook obsession buddy!! Patti Smith
Oh wow....I'm thinking of you lady! Hang in there! :)
hang in there girlie!!!! you are still in my prayers!!!
I have been following your post and I so pray that you will get a clear answer. The unknown is enough to drive you crazy. I too suffer from an autoimmune disorder, Myasthenia Gravis and these diseases suck! Please keep your wonderful spitit and determination. I so love your work! You are so talented!
Jocelyn
My prayers are with you and your family.
I am praying for good news! Your in my thoughts and I can only imagine how difficult this is, stay strong!
You know I am thinking of you Nancy and you know I am praying for you and you know that even half way across the world that my heart and my thoughts are with you. I know you are hanging in there as difficult as it is and you know that through our PM's I am there for you as much as I can knowing the heartache and the waiting is almost totally overwhelming. Whatever the outcome know that there are so many people who are here for you and if I can do anymore you just sing out. It will be a very exhaustive wait I know but you know the specialists need to get this right and whether it is the myelin that is deteriorating due to the lupus or due to MS will be what they will find out and then put you on the right path of medication for it. Hugs sweetie and take care! xo
Miss Nancy, beautiful Bella and beautiful work! I understand the rest of what you are going through. I have been there 09/28/07. A devasting day for me as well. You are in my prayers and thoughts. Please remember MS is not a death sentence. It just makes us changes things in our lives a little. Keep a warm heart and smile. Your have the strengthen and the love. Rhonda
love u girl...u know you are in my prayers!!!!
Get your rest. You and your family continue to be in my prayers.
Hi Nancy, hang in there.. I get the whole thing with going back and forth between MS and Lupus causing issues. The wonderful world of LUPUS (NOT),,,, Hang in there hon....Lupus is sucking, but we don't have to let it brings us down.....
oh my goodness, Nancy. I'm not sure I can add much to the amazing posts your friends have left you. This has to be an incredibly hard battle you're waging right now. I only wish there was a wand we could wave to make this all go away. Your strength, your honesty, and your humble sense of humor through all of this is such an inspiration. I know that doesn't help you with the pain ... or the agony of not knowing, but it's true.
Sending more prayers your way, hon! You know that our voices will be heard!!
Hugs!
i haven't visited your blog in awhile (i lost it) but i'm so glad i'm back! i had no idea what you were going through and i want you to know i'm praying for you, your family and your doctors!
stay strong and keep us updated.
Awwww Nancy!! I'll be praying for you. Hang in there girl.
My goodness Nancy you sure have been through the gammit...
The "insulation" that's deteriorating is called Myelin. I am still keeping prayers that this is Lupus and not MS. Big hugs for everything and more. I am so inspired by you girl. You've got such a sunny disposition despite all that you've been through and I really admire you tremendously. Thank you for giving so much back to the world. Thanks for who you are and thanks for sharing so much of you with so many.
I feel privileged to know you and call you my friend.
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