Volume 7 Issue 2
Article 10
Optic Neuritis Support Group My name is Kristin Lee. I am 32 years old and have been married for almost 11 years. I have been blessed with two beautiful kids who are now 9 and 10. I have had Optic Neuritis for more than four years. I cannot say that it all started with a dramatic episode that caused me to be rushed to the local hospital. It actually was quite by surprise that I even realized I was having problems. I was at the local mall doing some shopping with my children. I had been having problems with my right contact lens; it seemed to have a tear or something stuck to it causing me to see a blind spot out of that eye. My optometrist's office is located in the mall, so I decided to stop in without an appointment to buy a replacement lens. My doctor insisted that she take a look at my eyes just to make sure that it was the contact lens causing the problem. After the examination, she said I needed to call someone to pick me up, because I should not be driving. She told me that my optic nerve was swelled and that I would need to have an MRI immediately. An MRI for what? I mean I just came in for a contact lens, right? After some explaining that this was serious, my doctor told me that this was a sign of MS. Well, I felt lost, scarred, and confused. I had to keep it together; I had my kids with me. After getting more information on what was happening with my eye, the stress of the situation really started. I was told an MRI was imperative, but I had no health insurance at the time. We managed to pay cash for the first one and it was perfect; no lesions, no MS. The doctors treated me with IV steroids at a hospital in the city. The treatment was worse than the vision problems. I had steroid induced psychosis. What a nightmare. On the second day of steroid treatment, I lost it in the hospital, removed my own IV, left the hospital, and began walking in this city with no idea of where I was or where I was going. I began having daily panic attacks and was unable to leave my bedroom for days. I lost 12 pounds. I had to start seeing a psychiatrist. After about three months, the majority of my vision returned. Time had passed and all of the neurologists seemed to think it was just a fluke and would not happen again. Well, about 6 months later, I had a second attack on my right eye this time. It was the same drill; IV steroids again, but this time with nerve medicine to keep the anxiety in check. This cycle has continued for over 4 years, and I have had more attacks than I care to keep track of or count. I have severe bouts of fatigue and summers are long with the heat and humidity. We try to stay by the pool and avoid amusement parks, zoos or any outdoor activities during the hot months. My body does now seem to be more tolerant of the steroids. I also have a home health nurse who does the treatments at home, so it keeps things more normal for my family. As far as other symptoms go, I also have complete heat intolerance. If I raise my core temperature, I loose my vision in my right eye completely. I often have a lot of fatigue. I get swelling in the joints of my hands and feet, as well as a burning sensation and I have severe and frequent migraines. To date, I have not received any other diagnosis other than Chronic Optic Neuritis. Sometimes I feel frustrated that no doctor, to this point, has been able to tell me why this is happening. The reality of losing a little more of my vision with each new attack sometimes seems overwhelming. Depression seems to go hand in hand with this condition for me. I have been battling ever since my first attack. This is my journey. I have not been able to find anyone else with Optic Neuritis as their diagnosis. People with Optic Neuritis often have it in the context of MS or NMO. Finding The Transverse Myelitis Association has been great for me and hopefully I can find others who are experiencing similar circumstances. Having a good support system is the key to staying positive. I hope you will get involved in our Optic Neuritis Support Group. Please get in touch; we would love to hear from you. Kristin Lee Jenn Nordin will be working with Kristin in the ON Support Group. We encourage you to get involved and to get in touch with both Kristin and Jenn. Jenn Nordin |