Multiple Sclerosis Research
Donation protected
Some of you may know my story and some of you may not. In July 2007, I attended a county fair with my family. It was a long, hot day of fair food and concerts. When we finally arrived home I seemed to have sleep in my eye or something that I couldn't rub away. I looked in the mirror and couldn't see anything. I figured I was just tired from the long day and went to bed. The next morning, it was a little worse and yet I couldn't see anything I could rub away or remove. I went through my day and the next morning it was even worse and my left eye's center vision was growing more and more black. One the third day of worsening vision, I went to an open house at my eye doctor's new office. I mentioned I should make an appointment and my symptoms and he insisted on seeing me immediately. I tried to put it off, but he was very insistent. After a few tests, he concluded that I had Optic Neuritis, a common symptom of Multiple Sclerosis (Multiple Scars).
Suddenly it was as if the doctor and I were the only ones in the office. What?!, I thought. Instant panic and shock sprang through my body. I just have a little something in my eye, I had been thinking. I'm just tired. This can't be. I'm young and have two young children at home. I don't have time to be sick, let alone have a debilitating disease.
I didn't have time to process much. I had to call Jeff, my husband, and have him come pick me up immediately and take me 30 minutes away to an Ophthalmologist for a second opinion and hopefully make a short window of opportunity to get an MRI of my brain and spinal cord as well as a spinal tap. I could not even keep my composure on the phone. Luckily Dr. Sybesma is a very compassionate man and a close friend. He took the phone from me and spoke with Jeff explaining the situation. I could not drive myself as my eyes were dilated. Not to mention that I was in no mental state to drive myself. Jeff left one of the busiest days of his work and we frantically called friends to handle the kids after their activities and explain to them that we were at an appointment (they were only 8 and 6 at the time). The drive to the next appointment was a quiet one as we tried to process what we just learned.
My fear? Not being able to SEE my children as they grew into adults. Not being able to SEE my grandchildren. Not being able to SEE Jeff as we grew old together. Wait, maybe not being able to see ourselves get older was a good thing. ;)
As we sat in a waiting room watching the clock tick waiting for insurance pre-approval for the tests, we came to the conclusion that we'd have the test done whether or not insurance would be paying. We talked the staff into pushing forward with the testing as there was limited time in the imaging center for last minute scheduling.
Days went by as we waited for results. During the waiting period I went through a three day period of steroid infusions to lessen the Optic Neuritis (optic nerve swelling), which is how I gained my sight back, thankfully. Praise God!
There is no single test that will definitively say you either do or do not have MS. These results only are indicators along with medical history used for diagnosis. Needless to say, MRI results showed lesions (scars) on my brain and spinal cord and the spinal tap results showed DNA markers for MS. As far as anyone knows, I am the first in my family to have this disease. Not exactly what I would have chosen to be one of my firsts.
I have since been to Mayo Clinic (Rochester) for third opinions and had multiple flare-ups of numbness and pain over 75% of my body, each time praying that it's not permanent. Each flare-up required steroid treatments to reverse the effects. Trust me when I say these are not fun for the patient or anyone within a 5-mile radius of the patient. Prednisone and Solu-Medrol does not make for a friendly person. (Insert nervous emoji face here!)
In 2009, I began doctoring at Des Moines Ruan Mercy Clinic of Neurology where I am currently being treated and am fully comfortable with my doctor and his staff. They have told me I am "stable," although I don't think my family would agree. I'm thinking they are defining the word differently.
I have been on regular MS treatment for the past five years and do suffer from fatigue and some cognitive deficits. I have residual tingling in my legs from my knees to my toes from previous MS flare-ups. Some days I may sleep 12-16 hours if I have not managed my energy level properly. I often say incorrect words or am not able to think of someone's name that I know very well. Please don't take offense if I call you by the wrong name or cannot remember it - I really cannot help it. Although these things can be frustrating to me and those around me, they are manageable and are far less severe than others with MS, so I am thankful that my progression has been slow.
My family and friends are very supportive and I could not do it without their daily support. They are very patient and understanding and help correct me when my words don't make sense. They've become pretty good interpreters.
Jump to present day, Jeff and I are proud MARS Foundation Board members. http://www.helpuscurems.org/
This Board executes an annual fundraising event and works closely with the MS Society to hand pick scientists and research projects that work directly towards a MS cure. 100% of sponsorship will go towards MS Research.
Suddenly it was as if the doctor and I were the only ones in the office. What?!, I thought. Instant panic and shock sprang through my body. I just have a little something in my eye, I had been thinking. I'm just tired. This can't be. I'm young and have two young children at home. I don't have time to be sick, let alone have a debilitating disease.
I didn't have time to process much. I had to call Jeff, my husband, and have him come pick me up immediately and take me 30 minutes away to an Ophthalmologist for a second opinion and hopefully make a short window of opportunity to get an MRI of my brain and spinal cord as well as a spinal tap. I could not even keep my composure on the phone. Luckily Dr. Sybesma is a very compassionate man and a close friend. He took the phone from me and spoke with Jeff explaining the situation. I could not drive myself as my eyes were dilated. Not to mention that I was in no mental state to drive myself. Jeff left one of the busiest days of his work and we frantically called friends to handle the kids after their activities and explain to them that we were at an appointment (they were only 8 and 6 at the time). The drive to the next appointment was a quiet one as we tried to process what we just learned.
My fear? Not being able to SEE my children as they grew into adults. Not being able to SEE my grandchildren. Not being able to SEE Jeff as we grew old together. Wait, maybe not being able to see ourselves get older was a good thing. ;)
As we sat in a waiting room watching the clock tick waiting for insurance pre-approval for the tests, we came to the conclusion that we'd have the test done whether or not insurance would be paying. We talked the staff into pushing forward with the testing as there was limited time in the imaging center for last minute scheduling.
Days went by as we waited for results. During the waiting period I went through a three day period of steroid infusions to lessen the Optic Neuritis (optic nerve swelling), which is how I gained my sight back, thankfully. Praise God!
There is no single test that will definitively say you either do or do not have MS. These results only are indicators along with medical history used for diagnosis. Needless to say, MRI results showed lesions (scars) on my brain and spinal cord and the spinal tap results showed DNA markers for MS. As far as anyone knows, I am the first in my family to have this disease. Not exactly what I would have chosen to be one of my firsts.
I have since been to Mayo Clinic (Rochester) for third opinions and had multiple flare-ups of numbness and pain over 75% of my body, each time praying that it's not permanent. Each flare-up required steroid treatments to reverse the effects. Trust me when I say these are not fun for the patient or anyone within a 5-mile radius of the patient. Prednisone and Solu-Medrol does not make for a friendly person. (Insert nervous emoji face here!)
In 2009, I began doctoring at Des Moines Ruan Mercy Clinic of Neurology where I am currently being treated and am fully comfortable with my doctor and his staff. They have told me I am "stable," although I don't think my family would agree. I'm thinking they are defining the word differently.
I have been on regular MS treatment for the past five years and do suffer from fatigue and some cognitive deficits. I have residual tingling in my legs from my knees to my toes from previous MS flare-ups. Some days I may sleep 12-16 hours if I have not managed my energy level properly. I often say incorrect words or am not able to think of someone's name that I know very well. Please don't take offense if I call you by the wrong name or cannot remember it - I really cannot help it. Although these things can be frustrating to me and those around me, they are manageable and are far less severe than others with MS, so I am thankful that my progression has been slow.
My family and friends are very supportive and I could not do it without their daily support. They are very patient and understanding and help correct me when my words don't make sense. They've become pretty good interpreters.
Jump to present day, Jeff and I are proud MARS Foundation Board members. http://www.helpuscurems.org/
This Board executes an annual fundraising event and works closely with the MS Society to hand pick scientists and research projects that work directly towards a MS cure. 100% of sponsorship will go towards MS Research.
Organizer
Kristin Cook
Organizer
Nevada, IA
