Thursday, August 16, 2012

The Clinical Study

Purpose of the Clinical Study

  • To find out if special diagnostic tests improve the ability to predict  the outcome after a patient with MS develops acute optic neuritis. 
  • To find out which clinical tests, and which parts of MRI tests best predict outcomes in patients with MS and optic neuritis.
  • To make it possible to more quickly and easily evaluate the usefulness of new drugs for the treatment of optic neuritis and MS.

Cast of Characters

Me - Yes, by some miracle (another one), I have been accepted into the clinical study. The pharmaceutical company has agreed to help out with the medication for the two years (a whopping value of over $104,000.00). After that point? I figure we will just have to cross that bridge when we come to it. 

Dr. Kathleen Digre - Dr. Digre is a Professor of Neurology and Ophthalmology at the University of Utah School Of Medicine.  Her list of awards and credentials is a mile long. She is brilliant and kind and forth-right. She scurries about the Moran Eye Center with a gaggle of med students following closely behind. She is the doctor who encouraged me to take part in this study and is my personal doctor.

Dr. Bradley J. Katz - He is a  Neuro-Ophthalmologist also. I haven’t yet seen the face behind the name, but I hear it a lot. He is the one who designed the clinical study. It is said that he is tall and handsome and that I am sure to meet him someday.

Barbara Hart - Barbara is the coordinator of the clinical study and literally takes me by the hand from place to place. At this point, I am her one and only participant (they hope to have 10) so we are both learning as we go.

Two Clinics full of other doctors, nurses, lab technicians, students etc. I’ve met SO MANY that I can’t come close to mentioning them by name, but they have all been very kind and attentive.

Like Dr. “Don” for instance. He administered my first test, the VEP or Visual Evoked Potentials. Dr. Don seemed a very eccentric man who talked a mile a minute. It was 9:00 am when I saw him and he admitted  that he had already downed four cups of coffee. He was VERY impressed with the fact that I was only one of four female patients out of thousands in the past 40 years who placed my purse on the hard chair instead of the soft one! (What?) He mentioned the majority place their bags on the soft chair leaving the hard one for their spouse. I found out from one of his co-workers that he used to raise a colony of albino cats at the V.A. hospital. Does this spell E-C-C-E-N-T-R-I-C?

Dr. Don explained EVERYTHING as he placed electrodes on my earlobes and on a particular spot on my scalp above the part of my brain that processes vision. As I watched a checkerboard of black and white squares switch back and forth, an electric signal was generated by my brain producing an image like this:

This chart shows that my left eye (below) produced a signal slightly slower than my right (above). He also noted from this chart that I have an unusually symmetrical brain. No surprise there!

The other tests (lasting in total about six hours) included loads of eye charts, tests for central and peripheral vision, and an ophthalmic exam with my eyes dilated. Oh, and millions of photographs of my eyeball with two types of dye injected into my veins, one of which made my skin yellow for a time. I looked down at my bare feet, and they were YELLOWish! 

By the way, my left eye proves to be doing MUCH better.

You'd think that just one time I'd remember
 to bring my own sunglasses so
I wouldn't have to sport these beauties!
Barbara, also administered a series of neurological exams to measure the severity of MS. I walked as fast as I could for 25 feet and left Barbara in the dust; and was way above average in the finger dexterity and cognitive tests. Barbara stated, “You like to do well, don’t you?” 

Hmmm.... Do I smell an overachiever?

They drew eight more vials of blood for DNA and genetics testing. They will also study the presence of biomarkers, proteins and other substances in the blood that may indicate how my body responds to optic neuritis and MS.

Coming up? An Optic Nerve MRI, a visit with an MS specialist, and a once a week injection of Avonex (the liquid gold drug of $1000.00 per shot.) They are having some difficulty scheduling these.

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?