Friday, July 12, 2013

New Plan

I went to New York on Thursday afternoon. I had a good visit with Dr. Williams. He looked over all the tests, went through my two inch patient folder, and did a full neurological exam. I still show no signs of weakness or gross motor problems, which is a positive thing!
We don't know why I have a lesion on my sign that is chronically enhancing. I have had a full round of IV Steroids, and multiple IVIG infusions, with CellCept and steroids but it remains. That means the lesion is active and won't "die". I believe it is what is causing me the most "discomfort" right now.

We also don't have a final name to put on my illness. As far as I can tell you, I have a autoimmune disorder that affects my brain, spinal cord, hearing, eyesight, and thought processes.
  • I have a large lesion right in the middle of the corpus callosum part of my brain. (Susac)
  • I have small round lesions all over my brain.
  • I have unexplained mild to moderate hearing loss in both ears. (Susac)
  • I have a ringing sensation in my ears that comes and goes (Susac)
  • I have typical lesions on my spine (MS)
  • I have had optic neuritis in my left eye (MS)
  • I have crazy fatigue (MS)
  • I have an electric shock sensation when I put my head down
  • I have a small area of my leg with no feeling
  • I get headaches daily (Susac)
  • When I decrease my steroids or my lesions are active, I have a hard time finding my words.

Needless to say, I don't fit into a "proper diagnosis". 
On Monday morning, Dr. Williams will once again be sharing my case with all of the doctors at the International Multiple Sclerosis Management Practice (IMSMP). They all know my case and are familiar with my issues. I guess it's not everyday that someone presents with something rare like Susac's. He is hoping that they will agree with, or challenge him on his treatment plan for me. 

It is our plan to start a new drug called Cytoxan into my therapy. Cytoxan is a chemotherapy drug. It will be infused once a month for 18 months.
  • Adverse drug reactions include chemotherapy-induced nausea and vomiting, bone marrow suppression, stomachache, hemorrhagic cystitis, diarrhea, darkening of the skin/nails, hair loss or thinning of hair, changes in color and texture of the hair, and lethargy. Sounds fun!
This will be replacing the Cell Cept I'm currently taking with the hope that it will quiet down the lesion and allow me to slowly decrease the steroids. Our main goal is to get me off steroids completely.
I will speak to him on Tuesday to get the final plan confirmed and I'll send another update then.

Thank you for all of your thoughts and prayers. It means so much to us! It's hard to believe it's been almost a year since I was first diagnosed, July 17th! Even though I don't feel great everyday, I do have better days now. I am so much better than I was last summer. I feel as though I am on a roller coaster journey, and one of these days, this ride is going to stop, and I will get off!


1 comment:

  1. Haley, Thank you again for taking time to give all us an update. We feel so for you and for your family. Will be praying that Monday will be a good for the doctors to determine how to proceed. We send our love and prayers. Aunt Carolyn