Tuesday, August 14, 2012

I Can't Sleep

It’s 1:30 am. I have a lot on my mind. I received a call from Dr. Digre yesterday. For some reason she went from -- I “might have” MS to -- she’s “pretty positive” I have MS. She would like me to participate in a clinical study for Optic Neuritis and MS. Only problem is - to be a part of this study, it is required that I take the medication AVONEX which does not cure MS but may decrease the number of flare-ups and slow the occurrence of some of the physical disability that is common in people with MS. It is approved for use in people who have experienced a first attack and have lesions consistent with MS on their MRI. (I guess that’s me.) 

MS is a life-long disease that affects the nervous system by destroying the protective covering (myelin) that protects the nerve fibers.

This medication just happens to cost $4000.00 a month AND it is NOT covered by our insurance plan!! That’s about all we MAKE in one month! It is not paid for by the study because it would be prescribed for me anyway and supposedly I would need to be on it for the rest of my life! 

The possible side effects of the drug are frightening. 

So I have some questions:

When do the benefits of this drug out-way the possible side effects and staggering cost?

Do I wait until I have another attack before I believe the doctor and take the medication?

Why in the world do I have such costly health insurance if it isn’t going to help me when I need it?

How in the world am I going to be able to afford to take this drug which just MIGHT help?


  1. I just read this! I am calling you in the morning.

  2. I'm finally catching up on your recent medical issues. I can't believe this is happening! Hang in there. You are so brave facing so many unanswered questions. I hope you know how much I love you and will pray for you.

  3. Hello my name is Shaylee Mecham, I have met you once before. I was your daughter Emily's Accompanist for a year in college (pre-mission). Anyway I am commenting because my husband has MS, and we have dealt with many of the issues/ questions you've said in this post. The medications ARE terrifying but the consequences of not using them is even more frightening, and the cost is astronomical. Avonex should have a P.A.P: Patient (or prescription) Assistance Program to help you pay for your MS medications. That's how we are able to get my husband's Rebif (another MS drug). Sorry to intrude and comment but I hope that is helpful and you are welcome to check us out on our blog joeandshay.blogspot.com

    Good luck,