Monday, March 4, 2013

Time for Mayo

Well, tomorrow marks the two week mark since starting on the prednisone. So far there has been no improvement of symptoms, but there have been lots of side effects. I am so exhausted from not sleeping. My stomach is very bloated and upset, and the meds make you feel hungry constantly. So much fun!

I spoke with the doctor about how long it might take to get the feeling back in my legs, and unfortunately, I wasn't thrilled with the answer. He says that the goal of treatment is not to reverse the symptoms, although it could happen, the goal is just simply to slow the progression of the disease. Not exactly what I had been hoping for.

He also says that the insurance will most likely not pay for the IVIG treatment due to the fact it would be an off-label use and is very expensive. This leaves one other treatment option, an anti-rejection medicine called Cellcept. After reading through the possible side effects (death, cancer, life-threatening infections), I am thinking that the remote possibility of partial or even complete paralysis years down the road seems like the better option. I have a bunch of difficult decisions facing me in the near future.

Today, I had my regular appointment with my family doctor, who said he thinks that it is time to go to Mayo Clinic. He is going to send a referral and we will wait and see if they take my case. I was not convinced that this was necessary, but he said if I were his wife, Mayo would be their next stop. He thinks due to the rare nature of the disease and the fact that the doctor at University of Chicago have not treated many patients with this problem, it would be best to go to Mayo where the a group of doctors has been researching this disease process.

So, in the meantime, I would appreciate your prayers! Please pray for Chad and I to have wisdom to make tough decisions. Pray that if it be God's will, Mayo might be able to accept my case in a timely manner. Pray also for the details of travel, work, expenses, etc. that would be involved if we have to go to Minnesota as well.

Have a great day! Thank you all for your prayers!

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