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.

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?

Results

Call me chicken. It took me two days to get up the courage to call about my lab results. I was curious, but didn’t want to hear if the news was not positive. 

I called and left a message before noon....

Dr. Digre called back at about 4:30 apologizing that she hadn’t phoned earlier. Some of the blood tests hadn’t come back.

After asking how I was feeling, she got right to it. 

Blood tests - normal (That’s good.)

Lumbar Puncture (Spinal Tap) was suggestive of Multiple Sclerosis-MS, but not definitive. Seems I have “some markers” in my spinal fluid just as I did in my brain. Something about the fact that the Oligoclonal Bands are elevated. 

As I mentioned before, they also found that the pressure in my spinal fluid is elevated. Dr. Digre seems to think that this might also have some bearing.

Do I have MS? All she can say is that I might, but she’s not 100% positive. We will talk more at my appointment on the 16th and discuss whether she feels I should see an MS specialist.

She ended the conversation with, “Do you see any improvement in your vision?” 

I gave her a resounding, “YES!”

She concluded, “That is WONDERFUL! I can’t express how THRILLED I am to hear that the steroids are working so quickly!”

Maybe it is the steroids; more likely it is the steroids coupled with the faith and prayers of so many sweet, thoughtful, beautiful, treasured family and friends. I do believe I have witnessed a miracle!

GREAT BIG hugs to all of you! I realize that I am not “out of the woods” yet, but I am in the right hands. And today, I am SO grateful for so many things!

I "See" Some Improvement!

It’s 5:35 am. I’m not certain the steroids were expected to work so quickly; I was told it might take weeks or months even, but I really do see some improvement this morning! The tears of gratitude just keep coming! Now to pray that today’s spinal tap and scores of blood tests come back normal.

The procedure was scheduled for 9:00 am. First thing, I asked the nurse if she could remove my I.V. since I was all finished with my infusions. She shook her head and said she could get in BIG TROUBLE (actually she said she would get her “butt kicked”) if she took it out. She told me I would have to call a home health nurse through the same company that put it in. Then she looked at me sympathetically and said, “I will do it on one condition; that you don’t tell a soul.” I promised (this blog doesn’t count, right?) She locked the door, and freed my arm from the itchy contraption. I was SO happy to have my arm again!

She took my blood pressure - of course it was high. It is every time I go to the doctor. Then my temperature - 100.7 degrees, and I was flushed too -- It was the steroids. Gained 6 pounds in 3 days -- again, the steroids. Nice I could blame it on something besides myself.

The spinal tap (lumbar puncture) took about a half an hour. It was performed by another optic neurologist who already knew all there was about me. The anesthetic was WAY more uncomfortable than the spinal itself. As the doctor drew the fluid, she noticed that it exhibited higher than normal pressure. This she mentioned, could account for the slight inflammation in the optic nerve of my good eye. Dr. Adesina detected this on my first visit, but Dr. Digre thought it might just be a part of my anatomy.

She removed four vials of fluid and showed them to me. Spinal fluid is as thin and clear as any of the purest water I have ever seen. I was amazed; I had no idea. She explained the possibility of acquiring a spinal headache. The spinal fluid holds up the brain and supports the skull. The skull drops down a bit when it is removed. Solution? Lie down.

I had nine vials of blood removed for testing also. I should be able to call about results tomorrow. 

I lazied the rest of the day on the couch. Matthew and Audrey took great care of me and David came to mow the backyard for which I was very grateful. No spinal headache! My back is just a little sore, that’s all.

Do I Have the Faith for a Miracle?

Randy left for Chicago this morning. He received a scholarship earlier this year from the Professional Photographers of America and had this seminar booked a couple of months ago. He was very hesitant to leave me, but I assured him that I would be fine, that he should go ahead and go. “And when you get there, ‘be where you are,’ “ I encouraged him. “Get the most out of this seminar that you possibly can, so that it is worth both your time and the travel money.” He will return on Wednesday.

Audrey and Matthew were so sweet to stay with me today. They will drive me to my appointment to have a spinal tap in the morning.

I have had a particular painting on my mind a lot lately. It is by the Danish artist, Carl Bloch, and is entitled “Healing the Blind Man.” 

Christ is reaching out to a blind beggar. To the left of Christ is a skeptic standing with his arms folded, doubting the scene in front of him. There is a curious child being restrained by a disciple. A hopeful follower stands to the left as well as a man who seems to have his eye on the sceptic.and Two observers receive a bit higher vantage point on top of the wall. All are watching and waiting.

The story comes from St. Mark 10:44-45:

 46 And they came to Jericho: and as he went out of Jericho with his disciples and a great number of people, blind Bartimæus, the son of Timæus, sat by the highway side begging.

 47 And when he heard that it was Jesus of Nazareth, he began to cry out, and say, Jesus, thou Son of David, have mercy on me.

 48 And many charged him that he should hold his peace: but he cried the more a great deal, Thou Son of David, have mercy on me.

 49 And Jesus stood still, and commanded him to be called. And they call the blind man, saying unto him, Be of good comfort, rise; he calleth thee.

 50 And he, casting away his garment, rose, and came to Jesus.

 51 And Jesus answered and said unto him, What wilt thou that I should do unto thee? The blind man said unto him, Lord, that I might receive my sight.

 52 And Jesus said unto him, Go thy way; thy faith hath made thee whole. And immediately he received his sight, and followed Jesus in the way.

This blind man didn’t have access to a myriad of doctors and their various tests, Optic Neurologists, MRI’s, steroids, spinal taps. He just needed to reach out to Jesus Christ with faith and he was made whole. 

God’s power is still on the earth today through the power of the Melchizedek Priesthood. I have been given the blessing of sight through that Holy Priesthood. I pray for the great faith of Bartimaeus that I too may be healed.

I have felt the faith and prayers of family and friends and the great comfort of the Holy Ghost. Already I am seeing shapes in my left eye. I sense that a miracle is just around the corner.

The IV

Dr. Digre wanted me to start the three-day dose of steroids ASAP. Problem was, it was a weekend. Her receptionist arranged to have the medication kit delivered and to have an infusion company assign a nurse to come to my home to insert the IV into my arm.

The nurse’s name was Stephen.  He seemed a little a little gruff on the phone, but softened when he asked me about the veins in my arms. “I have great veins,” I told him. He replied, “I love you already.”

He was a military man; he made home nurse visits as a side job. I mentioned that I was planning to play a Symphony concert at Deer Valley tonight and asked if he could place the stint in the middle of my arm where I could hide it under a long-sleeved white shirt and it wouldn’t bother me too much. He exclaimed, “You’re planning to what?” We laughed about the possible psychosis the steroids could bring on and the strange reactions I might experience at the concert -- like suddenly standing up on my chair and offering up my own rendition of Orange Blossom Special or something.  I was a little nervous about how I would react to this stuff.

First dose went in smoothly. Burned a little, but nothing I couldn’t handle. Experienced a nasty bitter metallic taste in my mouth, but that was all. 

The IV itself was an amazing little contraption. Instead of hanging a bag on a stand and having to be stationary until it empties, the medication is screwed into the stint and then I can just stick it in my pocket and go about my normal activities. It empties on its own in about an hour, we unscrew it, flush the stint with saline and then insert heparin to prevent the blood from clogging. It is quite a slick process.

The symphony concert went well and no one was the wiser. Amazing that I could execute the difficult passages with clarity and increased speed. I smiled to myself about this aspect. I think Jack Ashton, my stand partner sensed something, because he kept turning the stand my direction. Maybe he was just being his usual kind and thoughtful self.

The Pity Party is Over

And now it is time to adapt. I was scheduled to play for the recording session of Jenny Oaks Baker’s new Christmas album this morning. I figured I had better get used to what I have to work with. Lucky for me, a person can’t tell anything is wrong by looking at me and I was able to keep my situation a secret. My eyes move together, and my pupils still react pretty much the same. 

Reading music with just one eye took some getting used to, but it really wasn’t too bad. My right eye was a little tired of pulling all the weight after three hours and I had a bit of pressure behind my bad eye,  but I was relieved by how well it all went. Maybe if I had used a patch over my eye, my brain would have been able to sort through it all a little better, but because I knew it was imperative, my increased concentration level made up for the confusion.

I have a son-in-law who lost the use of one eye when he was 16-years-old. He copes so well. The only thing that is a little off is his depth perception; a person really needs two eyes for that. I soon found this out when I accidentally knocked my stand partner’s bow off the stand and whacked the viola player next to me with my bow. I’ll just need to keep myself in a tidy little package. Oh, and when I left the studio, I thought there was a step, but alas there was none. That was a bit awkward.

I was a somewhat nervous about my appointment with Dr. Digre. Today I will find out about my MRI. Of course my blood pressure sky-rocketed. Why do I have such a white-coat problem? 

I saw the familiar face of Dr. Adesina first thing. He is a kind and compasionate Afro-American optic neurologist working with Dr. Digre. He made an appearance in the ER on Monday to confirm Dr. Tabin’s opinion. For the next four hours I went through various eye tests and balance and strength tests to rule out a stroke. They checked my field of vision and the inflammation in my optic nerve. Dr. Digre came in and did the same tests to confirm Dr. Adesina's opinion. 

They feel strongly that I have Optic Neuritis. The protective insulation around my optic nerve is being attacked and is deteriorating leaving my optic nerve bare and vulnerable. They let me view my MRI which showed five or six other lesions in my brain also; this is indicative of Multiple Sclerosis. I am scheduled for a spinal tap and a slew full of blood tests on Monday morning bright and early. If Optic Neuritis is truly the case, it is likely that my vision could return partially or maybe even completely with “weeks or months.” To treat this they first give me a high dose of steroids through an IV for three days in a row. I will begin this treatment tomorrow. No sense in wasting any time.

Dr Digre was very kind and mentioned that the two of us were going to become very good friends in the next little while. I will be spending a lot of time in their clinic.

We came home hopeful and grateful that it was not a stroke or tumor and that there is a possibility that my eyesight will be restored. Randy has been such a brick through all this - calming my fears and all, but tonight at dinner he broke down and sobbed. We hugged and cried together. We are SO relieved and grateful.