Sitting in the neurologist’s office, I immediately noticed the magazines, brochures and pamphlets were mostly on Multiple Sclerosis.
When I followed the nurse into the examination room, he took my vitals and asked me some questions related to the symptoms that I had been experiencing. After taking some blood the nurse left the room, and in his place came my Neurologist. After greeting me he smiled softly and said, “I can see just by looking at you what you have. We will get further testing in a moment. Don’t worry, it is treatable and you will be better.”
I smiled in relief and asked him what was wrong. He said I had Ocular Myasthenia Gravis, which is an autoimmune disease, but that it was just in my eyes. He also reassured me that I would be better in a year, and I stared at him in disbelief.
He took me to another room and left me with a specialist who hooked a machine to each of my muscles, and with a needle touched my limbs, hands, fingers and face. The specialist was able to find out what nerves were damaged from my spinal cord injury. This was enlightening, because I actually found out that my nerves were only really damaged in my feet, which is why I still have no feeling and movement in them compared to other parts of my lower extremities. Most importantly, through this testing, he was able to see if the autoimmune disease had affected the muscles in other parts of my body, which it hadn’t.
When the neurologist returned, we spoke about me buying sunglasses that would cover my eyes like a wasp. I showed him the glasses prescribed by the optometrist. He said they would suffice, but I would need to change them often. As soon as we left his office we went by our local pharmacy to fill the prescriptions.
In the meantime, I had to try and explain what was wrong to my friends and family. I could see the concern in their eyes, and it only made me more afraid.
I just couldn’t believe this was really happening to me. Everything in my life was fine. I finally had everything I could have imagined after my spinal cord injury fifteen years ago - my amazing husband, my children, my wonderful home life, my career and writing endeavors and my work to contribute and help the disabled community.
My mother arrived from London in the last week of October to enjoy my participation as one of the three women in a wheelchair selected to be on the runway in Houston Fashion Week. It was also at this time, I was having problems transferring to and from my wheelchair. I was even having trouble grabbing things with my fingers, which made self-catherization difficult. My arms were like Jell-O. I couldn’t pick things up, and I began to have trouble sitting up in bed. My mother and husband were now assisting me, and none of us understood what exactly what was wrong.
At one point I even said to my husband maybe this is cancer, since we had just lost his stepfather to cancer. It was the only thing I could pinpoint considering this rapid decline in health that had overcome me.
Upon my return to the neurologist, my dosage of medication was increased and I was put on a regimen of steroids. He also talked to me about resting to conserve energy, but it seemed the more I rested the weaker I became. By November I was so weak that I was having trouble sitting up in my manual wheelchair.
I took the offer from one of my friends to use her spare power wheelchair. Being in a power wheelchair herself, from having polio as a child, she insisted using made it so much easier for her to take care of young grandchildren. I had stalled on the offer, because as a high functioning paraplegic I experienced a mental dilemma about making such a transition.
I also realized I knew nothing about this disease I had been diagnosed with, so I began researching it on the internet. In the process I located a support group in Houston. It is held the second Saturday of each month. I immediately contacted the lead facilitator and we spoke at length.
With all the information that was available online about Ocular Myasthenia Gravis, I started deciphering between this particular condition I was diagnosed with, but also generalized Myasthenia Gravis which is where the attack on the immune system was now happening all over my body. In most cases, if one was able to feel their feet, that is exactly where it would start. However, since I was already paralyzed, it made me wonder just how long I had really had this in me for it to only now surface? I found myself especially intrigued by the significant amount of information available online regarding unconventional treatment. Over the years, conventional treatment for Myasthenia Gravis has become increasingly successful. With the use of immune suppressants and steroids it can control the disease quite well. Although long ago it really was known as a grave diagnosis to have. It is a chronic neuromuscular disease caused by a defect within the transmission of nerve impulses to the muscles. The actual meaning of the name Myasthenia Gravis is Greek. In Latin it means, weakness in the muscles, and gravis means grave, which explains how severe the ability to cure this disease was at one point in our lives. However, there was also a stunning high success rate in the prognosis of people who also attached themselves to the unconventional protocol.
First and foremost it was all about the food changes that must be made. Specifically, it is foods with anti-inflammatory abilities that we should consume a lot of - fruits and vegetables. This is because it is the inflammation that causes the weakness in the muscles. The only problem with this though, was by now I was also unable to chew my food, and it was getting harder to swallow.