Tuesday, August 4, 2015

Update on the Next Step Re: Spine

Finally, we received a call from the UCLA neurologist today. She apologized for the lack of communication, and assured us that she hadn't called because she's been busy researching my very complicated case. She didn't want to call until she had the final piece of the puzzle.

Since the MRI was performed without IV contrast (because insurance failed to approve that), the results I reported about yesterday are not 100% certain. Next step? Actually re-doing the MRI with the IV contrast. Thanks, Aetna. Real smart. So, it ends up costing more. Once those results come in we will know how to proceed.

This doctor also mentioned the banding, or legions, in my brain. She's not certain that they are from radiation necrosis after all! That's another example of what I meant with always a diagnosis, yet never really understanding the true cause of the symptoms or test results. She mentioned that they could indicate GVHD or lupus. 

I also happened to visit my rheumatologist today whom I haven't seen in a long time. I was able to catch him up and he is going to do some extensive blood work and will also look at autoimmune disease as a possibility. He's also ordering a couple of x-rays of my knees, hops and pelvis to rule out any avascular necrosis which is dead bone from prednisone...the nastiest drug I have to take. Without it, the GVHD acts up and, if out of control, can be life threatening. It's just a catch-22 isn't it?

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4:16

Upon leaving the doctor's office I was walking to the parking lot with my walker and didn't notice a sudden sharp, yet small, decline and my walker left without me causing me to crumble. My body just went down onto my ankles, folding like an accordion. And once it started going, there was no brain communication to stop it, or pull myself up, or push my legs straight to prevent the fall. I laid on my side, and after the initial shock, I was able to move my knee and ankle and see that it wasn't broken. To get up, I had to get on all fours--knees, already in pain, pressed hard against the concrete in order  to leverage my feet underneath me with the aid of Mike and my doctor (who witnessed the fall and came to help) on either side of me pulling me up by the arms. I made it to the car and Mike and I split a nice meal at the Montecito CafĂ© before the pain really set in.

Hours later, I'm in a lot of pain, having a hard time bearing wait on my knee and ankle. If it's this bad tomorrow, I'll have to have it looked at...oh the timing! This was my week without kids to have a little fun with Mike out and, with his help, declutter and organize. I pray I recover quickly because I'm slow and laid up enough as it is, and even with the little I can do, my mind is active and I like to try, try, try.

Other than praying for my recovery/healing, you can pray that Aetna will come through on appeal Tuesday regarding a medication I've been on for over a year, need badly, and without it I will likely withdrawal. I ran out a week early because I had to increase the dose and even though the doctor wrote me a new dose prescription, they denied the pre-authorization. Tomorrow the doctor will appeal. If it fails, the next five days will be pretty tough. It's far too expensive (thousands) to pay out of pocket, especially because it comes in packets that are sealed in a box. You'd have to buy the whole month's worth.

I pray for YOU that you will be blessed this week in a special way for taking the time to care about me by reading my updates and praying for me. You are very dear to me!

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