After Nearly One Year

It’s been nearly one year since I experienced vision loss in my left eye and was diagnosed with Multiple Sclerosis.

For the most part I have felt good. Once in a while I have tingling or numbness in my forearms and shins, and becoming overheated drains me completely. Sometimes I feel as though I can’t think clearly, but maybe age is creeping up on me. Many  days I could actually forget that I have MS at all.

I figure I have given myself 45 Injections of Avonex. That’s once a week. I use the “pen” and get a three month supply sent to my home in a refrigerated styrofoam box.  

The click of the trigger still freaks me out a bit, and the ten seconds that I keep the needle in my muscle isn’t very pleasant, but I am grateful that I am able to do something preventative. I have qualified for assistance from the pharmaceutical company for one more year and am not required to pay the $1000 a week at this point.  I take the injection at seven o’clock AM on Sunday mornings just before I drive downtown for Music and the Spoken Word. That gives me time to perform before the reactions set in six hours later. At that point a slight fever sets in causing my eyes to go a bit haywire, and I experience achiness especially through my neck and back.  I have found that the reactions are less severe when I drink lots of water and take four Advil every six hours with Tylenol in between...

...Until Mondays. Then something happens. Most days I am typically me -- pleasant, smily, kind of easy going. 

But on Mondays. I think I turn into Mrs. Hyde or something. Randy jokes that he has to hide the scissors, knives, and matches! I don’t like myself or anyone or anything else and I can’t do anything right! Gratefully it only lasts one day. It’s best  if I just stay home and hide.

The medication has given me insomnia for which I was prescribed the generic Ambien. It works well. I can sleep from 11:00 pm until 3:30 am. I wake up for a few minutes then sleep again until 6:00. I was concerned about being dependent, but I found when I tried to go off it a couple of weeks ago, that my sleep is more important than my pride. It is possible for me to do without it, but I wake nearly every hour and feel pretty messed up in the mornings. 

On to the Clinical Study -- I have donated hours and hours to the Moran Eye Institute as a part of their Optic Neuritis study. These are NOT my favorite days as they serve to remind me that I have a problem. I do receive a gift card of $25 each time I go. So far I have saved them up. I want to purchase something meaningful when all is said and done, but I have NO clue what. Let me know if you have any ideas.

As part of the study, I have received 8 or so MRIs. On some days they test a new coil mri -- a spooky mask of nuts, bolts, and various colored wires. During the MRIs, it is required that I keep completely still and stare at one spot for up to an hour. Ever tried doing that? If you do, be sure that you get plenty of sleep the night before. One time I fell asleep and they couldn’t get even one good image. Twice, the vibrations made my nose tickle and I had to sneeze, bonking my head on the machine. Botched again! I really don’t know if I am much help in that respect.

Periodically the results are read by Dr. Katz, head neurologist for the study, and once in a while they send me his remarks. Last time I received them, I read them, then handed the papers to Randy, who took one short look, threw them on the counter and exclaimed, “I have seen enough! 

You got an F in sex!” 

Okay! THAT caught me off guard! Gave us a good laugh together!

I’ll have to admit that this diagnosis has effected me more mentally and emotionally than physically -- Is this a symptom? Is that a symptom? When and where will the next nerve myelin be attacked? Is this affecting my behavior?

Nothing significant has happened until this week.

I’d been experiencing a strange sensation in my right “good” eye for the past few days, and some pressure and tenderness to the touch since Thursday, plus my vision HAS seemed a bit distorted. I wondered if this is a precursor to another nerve attack?  I called Dr. Digre’s office on Friday but had to leave a message. I became increasingly concerned as the day wore on.

I might mention this has been an especially rough week. I haven’t felt myself. I had a feeling I was ramping up for another MS exacerbation. My eye had me a bit spooked.

Randy happened to take a business portrait this afternoon for Dr. Alldredge, the retinal specialist who donated his services and fixed the holes in Randy’s retina a few years back.  Randy expressed concern about my situation; Dr. Alldredge asked if I would be willing to meet him at his office in downtown Salt Lake tonight at 7:30pm -- I couldn’t believe he was willing to see me on a SATURDAY evening and was somewhat hesitant. Randy felt I should go.

Audrey invited me to attend the temple with her. While serving in initiatories, I received the distinct impression that I should go. And I did. Dr. Alldredge found that the optic nerve of my right eye was indeed, inflamed. Optic Neuritis again! Interesting that it is just shy of one year since I experienced vision loss in my left eye. The doctor gave me my first dose of solu medrol (a steroid) to reduce the swelling.  He will meet me tomorrow to do the same, and then check my situation on Monday.

I’m so grateful that I didn’t wait this time. I consider it a miracle, not just a coincidence that Dr. Alldredge came in for a portrait today. Three people listened to the whisperings of the Spirit and were an answer to my prayers. Dr. Alldredge who felt the need to have his picture taken after 21 years, Randy who expressed concern for my wellbeing, and Audrey who invited me to the temple where I could receive inspiration for myself. Today I experienced the hand of God in my life. I am truly blessed.

Tonight, and tomorrow night, you might pray and ponder, asking the questions: Did God send a message that was just for me? Did I see His hand in my life or the lives of my children? I will do that. And then I will find a way to preserve that memory for the day that I, and those that I love, will need to remember how much God loves us and how much we need Him.

--Henry B. Eyring

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?