I think my journey is pretty remarkable, and definitely should be shared. It is so obvious to me that the Lord has been by my side from the very beginning, and He continues to be there for me every day . . . getting me through this amazing, but sometimes difficult, journey.
I guess it all started in December of 2000 when Ron and I went on a Disney trip with my mom, Jess and Hunter. We spent 4 days at the park and 3 days on the cruise. The 4 days at the park were a lot of fun, and we were all psyched for the cruise. The first night on the cruise, I woke up feeling very dizzy and extremely nauseous. In fact, I was unable to walk to the bathroom and had to crawl; thankfully, getting to the bathroom in time to be sick. It was so bad that Ron had to take me to the infirmary on the boat later that morning. Once in the infirmary, we were told that they would give me fluids through an IV; but, if that didn’t help, they would have to get a helicopter to get me off the boat. Thankfully, the fluids worked and I was able to get through the remaining 2 days.
When we got home, I made an appointment with our family doctor. She wasn’t sure why I got so sick on the boat; and, just thought it was an ear infection. She said everything looked good, and to come see her again if the symptoms returned.
Everything was fine for a year or two after the Disney vacation. The only thing that was different was when I would go on walks with friends . . . it was obvious that my balance was off. Not thinking anything of it, I just ignored it.
It wasn’t until the end of 2004 that everything started to change.
Ron had just started working with The Neurology Center as a medical technician. (I find it remarkable how the Lord works. You’ll understand why I say this as you continue to read.) One of the doctors at The Neurology Center, Dr. Igor Cherches, had done the MS 150 in Texas for many years, and encouraged Ron to do the MS 150 in 2005. While Ron was training for the MS 150, I started experiencing horrible lower back pain. I went to a chiropractor for relief. After running several tests, I was told that I could have MS; and, that if the treatments didn’t work, I would need to see a neurologist. (I truly didn’t think it was MS, and just blew him off.) About that time I started seeing double. It was so bad that I would have to cover one eye so I could drive to and from work. Of course, being a mom and a wife, I didn’t have time for such nonsense and thought it would go away as quickly as it had came on. (Now, I didn’t say anything to Ron about the double vision as I didn’t think it was important.)
Okay, now it’s the MS 150 weekend and we’re getting everything ready. I am Ron’s support, so I am responsible for driving from Pearland to Houston to meet up with Dr. Cherches’ wife; and, then from Houston we drive to LaGrange. I am still seeing double so I cover one eye and use Dr. Cherches’ wife as my beacon to get to LaGrange. We spend one night in LaGrange and drive from LaGrange to Austin the next day. Again, I followed Dr. Cherches’ wife to Austin on Sunday. I never mentioned to anyone over the weekend that I was seeing double. Finally, the guys complete the ride, and we are heading home from Austin. It is during the drive home that Ron tells me that Dr. Cherches, unbeknownst to me, was watching me all weekend and told Ron that he thought I had MS or a brain tumor and that I needed to get an MRI ASAP. What’s funny is that I didn’t panic when Ron told me what Dr. Cherches had said. I stayed very calm and was just so thankful that soon I would know what was going on. It was such a relief on so many levels.
The next day I called my boss and told him that I would not be in that day as I was having an MS workup. But, I would be in on Tuesday. That day Ron took me to the eye doctor to see if she could find out why I was seeing double . . . she had no idea why I was seeing double. After the eye doctor, I went and had an MRI. The MRI took a few hours, and I was told that we would have the results in a couple of days.
I went to work the next day and gave my boss all the details of what occurred over the weekend. He was very concerned and very supportive, which made me feel so much better. I worked a full day, drove home covering one eye, and spent a normal evening with Ron and Jess and Hunter.
The next morning my world came crashing down. I was still seeing double, but this time, I was unable to move. The Neurology Center where Ron works has a policy that the doctors are unable to see employee’s family members as patients. So, Ron called Dr. Blum, who he had worked with prior to working with Dr. Cherches, and explained to him what was going on. Dr. Blum told Ron to bring me in immediately. By this time the results of the MRI had come in and it was obvious that it was MS as I had a lot of lesions on the brain and spinal cord. Dr. Blum told me that he wanted to put me in the hospital. I told him that I was not going to the hospital and that we needed to come up with another plan. (I refused to go to the hospital as I had delivered Hunter at a hospital and left within 24 hours of delivering him as the care at the hospital was so bad. I decided then that I would never go to another hospital unless I was on my death bed.) Dr. Blum was not happy at all, but we agreed that I would come to his office every day the remainder of the week for the steroids (Thursday and Friday). I was told that I would need to administer to myself the steroid treatments on Saturday and Sunday at home. He said if I didn’t respond well to this treatment, I would have to go to the hospital. I agreed. Dr. Blum called me on Sunday to see how I was doing, and was very happy to hear that I was doing very well . . . I wasn’t seeing double anymore and my balance was a lot better.
I took short-term disability when I was diagnosed with MS, and was back at work in 3 months. I continued working for 5 years, and took disability again in May of 2010. I took disability the second time because my back was killing me. The Baclofen that Dr. Blum had prescribed for the back pain was not helping at all. I saw Dr. Blum shortly after taking disability and he prescribed Lyrica for the back pain.
When I was initially diagnosed with MS, I was taking Copaxone as my treatment (which is a shot every day). I was on Copaxone for a couple of years, and then Dr. Blum switched me to Tysabri as the Copaxone wasn’t working as it had initially. Dr. Blum wasn’t very excited about putting me on Tysabri as a few people had died from it and the Tysabri had been black-boxed. It was when we were discussing Tysabri that it had been put back out as a form of treatment for MS. I told Dr. Blum that I was a Christian and I wasn’t afraid to die, and we just needed to do it. Dr. Blum reluctantly put me on the Tysabri, and was pleasantly surprised how well I did. Shortly thereafter, Dr. Blum put more of his patients on the Tysabri. To this day, I am still on the Tysabri.
When I was initially diagnosed with MS, Dr. Blum told me it was very important to tell all of my doctors that I had MS. Shortly after I was diagnosed, I met with my gynecologist for my annual visit. My gynecologist at the time was the doctor that had delivered Jessica 13-years earlier. To my surprise, she told me that having been diagnosed with MS didn’t affect her area. I was completely surprised by her response, and determined then that I needed to find a new doctor. It was at this time that I found Dr. McWilliams, and he was definitely an answer to my prayers. Dr. McWilliams is a Christian, and truly cares about his patients. He understood immediately that a lot of my symptoms were hormonal related, and worked with me to find an answer that I so desperately needed. In 2010, I had a hysteroscopy and it was the best thing I could have done.
During one of my visits with Dr. Blum, he instructed me to get an eye exam as he was curious how my eyesight was. Shortly after meeting with Dr. Blum, I made an appointment to see Dr. Dang. I told Dr. Dang that I had been diagnosed with MS, and that my neurologist wanted me to have my eyes checked. Dr. Dang did a complete eye exam, and determined that my eyesight was better than 20/20. (I had Lasic eye surgery years before, and my eyesight was better at the time that I saw Dr. Dang than when I initially had the Lasic surgery done. Who would have thought?!?!?)
Last year I started having issues going out in public. When I was working, it wasn’t an issue. However, since taking disability again in 2010, I found that I wasn’t going out in public as much; and, basically I was turning into a hermit. I didn’t do it intentionally, it just happened. Since I wasn’t going out in public very often, when I did go out in public, for whatever reason, I felt like everyone was watching me and I would have panic attacks. I saw Dr. Young and she was very helpful in dealing with this issue. Initially, I would meditate before going out; but, now I don’t have to do that as much anymore. I feel like I am past all of that now. I have found that it is so important to keep in touch with the outside world and to be active with one’s family and friends.
During this journey, I have found how important it is to eat healthy and to exercise. Exercise is so important in staying mobile. Part of my daily exercises entails swimming one day and riding a stationary bike, stretching, and doing a step workout another day. (Just FYI . . . if you are interested in swimming as part of your therapy, ask your doctor for a prescription. There are places that offer aqua therapy. If you have a prescription, most insurance companies will pay the cost for you.) Since being diagnosed with MS, I have heard how great yoga is. Unfortunately, I found yoga to be very boring and didn’t pursue it. I recently talked with a wonderful friend, and she reiterated how great yoga is and that I should give it another try. So, I will try it again and will let you know how it goes.
Other Points of Interest.
One thing that I would like to share before closing is that when I was in my early 20‘s, I was diagnosed with mononucleosis (or mono), also known as the Epstein-Barr virus. As reported in the New England Journal of Medicine in December 2001:
A team of Harvard researchers had identified a link between higher levels of anti-bodies marshaled by the immune system to battle the Epstein-Barr virus and the eventual development of MS. More research needs to be done before this link can be proven truly causative.
Blackstone, Margaret. The First Year – Multiple Sclerosis: An Essential Guide for the Newly Diagnosed. New York: Marlowe & Company, 2003.
To this day, I truly believe that having mono years ago is why I have MS today.
As you can imagine, there is a lot that I didn’t touch on in this section as there really is so much to tell. But, I feel like you have an idea on what the past eight years have been like for me. I know each of us has a different journey, and I would love to hear all about yours. Please feel free to share with us what you have been through in your journey, and anything else that you feel might be helpful to others.
Wishing you the best of health,