Home for Valentines!

There is something about me, the hospital, and holidays! I've had hospital rooms decorated for Halloween, Thanksgiving, Christmas, and now Valentine's! I haven't missed a major holiday! Guess I'll have to watch out when Easter rolls around. 

The good news?! I am home!!! I finished my final plasmapheresis treatment yesterday, got the results of my MRI (the lesion seems to be reacting to the treatment), had the plasmapheresis tubes pulled out of my neck (NOT fun!), and Dr. Okuda expedited my discharge! He will see me back in two weeks, and we will talk about long term disease modifying treatments. He discussed the options with me briefly, but we will make some actual decisions at the next appointment. As for the lesion, and its progress, we won't know if the treatments were a success until the next MRI in a month. We will be watching it closely to see if it's growing or changing. The hope is that the combination of steroids and plasmapheresis treatment will have successfully deactivated the current lesion, and that we will be able to prevent any future lesions or complications by starting me on long term MS medications. 

I've been realizing how rare Tumefactive MS is, and how little research and information is published on the subject. I've started a tab on this blog to collect some if the information I'm finding. I'll also try to keep track of the information the doctor gives me as we discuss my condition and treatment options.

This doctor continues to impress me with his expertise and his care of my case. It is the hugest weight off my back to not feel like I have to solve my own medical mysteries! I think I mentioned before that Dr. Okuda was gone for two of the days I was in the hospital to a medical conference in Florida. When he came back, he brought me a Florida T-shirt! Haha! That totally made my day! I think he knows how desperate I've been to have a doc who cares, and he is going above and beyond to show me that he does! Dr. Okuda is the Chief of Neuro-Immunology and the Director of the Multiple Sclerosis Center at Barrow Neurological Institute. Aka...he's one of the most accomplished and highly qualified docs in the country! I seriously can't believe how blessed I am to have him helping me.

It is good to be home...I am feeling a little unusual today, but I guess that is expected after springing from the hospital. Thanks everyone for your support and thoughtful messages. 

Mandy