My MS Story ... part one

It was the fall of 1997. Fletch & I had only been married 2 years, we had just moved to the beautiful Loess Hills in Iowa a year earlier & we had just started our family w/ the addition of a yellow lab puppy we named Sunny Begonia a few months before.

I was at work selling Omaha Steaks over the phone using a computer to place orders. I kept cleaning my glasses because the computer screen seemed a little blurry. After I did this several times, I finally checked for scratches on my lenses, and of course there were scratches because I never took care of them. But it was still driving me crazy & so I took off my glasses & held my hand over one eye & then the other. I thought I was noticing a little difference in my left eye but I still wasn’t sure. When I got home, I asked Fletch to stand a few feet away from me while I went back & forth holding a hand over each eye. It became very clear that I could not see his face clearly w/ my left eye. It really freaked me out.

I made an appointment w/ an Optometrist, who after several “better here, better here” tests, said that “if this is permanent, there was no corrective lens strong enough to correct it.” That’s when I started getting scared. I remember crying thinking I was going to lose my eyesight. He then referred me to an Ophthalmologist at UNMC. He ran a series of tests finding no answers, and more importantly, no solutions. It was getting scarier. He then referred me to a neuro opthamologist by the name of Dr. Richard Legge, who sent me immediately to Immanuel for an MRI. It was a Friday & he told me to get my results from the MRI & then bring them w/ me for my follow-up appointment on Monday.
Back in those days, they gave you a huge envelope w/ black & white film x-rays. That was the worst weekend ever as Fletch & I looked over the x-rays all weekend thinking I had several brain tumors. Immanuel had circled what appeared to be several spots on my brain. I was scared to death that I was going to die. I remember being at O’leavers w/ friends that weekend & being in my own head. I remember making promises to a god that I didn’t even know if I really believed in if he would just make it okay.

I went back in on Monday & Dr. Legge assured me that I didn’t have brain tumors. He said only one spot was circled on the x-ray from several different views. He informed me that I had Optic Neuritis & that it was treatable. I received At-home healthcare for 3 days where a nurse came out to my house in the middle of nowhere in the hills of Iowa. She administered an IV infusion of steroids a few times a day for 3 days. It was in December and it was impossible to get to my place in the snow. Of course it snowed & she couldn’t make it so I had to administer it myself. I remember freaking out & frantically calling Fletch & then her because my blood or something was going the wrong way in the tube. I guess I was supposed to keep something higher than something else & she talked me thru it over the phone.

I felt great on steroids. I was getting so much done around the house, singing as I cleaned & my appetite was amazing. I asked the doctor if I could be on steroids forever & he said no, that it wasn’t safe. I suppose that was a good call for my figure because we went to Champps, the restaurant at Oakview that had HUGE servings, and I was able to eat the entire meal! That never happens.

Anyway, after the steroid treatment my vision returned to 20/20. I was so happy! The doctor then told me that Optic Neuritis can be the first symptom of MS, but that one can get Optic Neuritis w/o having MS. He said he wasn’t going to mention MS in my file because I would NEVER get insured. He also said if I didn’t have any more symptoms for 5 years, I should be okay.

I never questioned what the symptoms might be & I never really thought about it again. As I said, it was 1997. We had just recently got our first computer, when Yahoo was still the main search engine & we used dial up modems, which made being connected ALL the time impossible. There wasn’t even enough information available on the World Wide Web, as we called it, so searching wasn’t an automatic daily routine. Had it been, I would have searched what symptoms to watch for and what it meant to have MS. We were young & living life & didn’t think about the future. We went back to life as normal. And I didn’t keep the promise I made at O’leaver’s that desperate night.