It was January 12th, just 2 weeks shy of my 15th birthday. Double vision, coordination issues, and tingling from my knees to my toes. We take a trip to see a pediatric neurologist who I call Dr. Happy. He grins as he delivers the diagnosis - Is it me, or is it wrong to deliver terrible news of a disease to a young teen that just started high school with a SMILE, like where is my check!?!? My family and I were devastated - who would not be? I was sent to Mount Sinai and was placed on a VERY rigorous dose of steroids. I met an AMAZING team of doctors and absolutely loved them.
As we were leaving the hospital, we learned that the main neurologist taking care of me was taking a job at New York Presbyterian as the head of the MS Center - SIGN ME UP! IM GOING! I followed my wonderful doctor to NYP and was with him for 6 years, 3 relapses and 4 drug changes. I loved seeing him and the nursing staff was fantastic. I was in college when I received a terrible phone call from him - he was leaving NY and moving to the south to his hometown for a job at another hospital. My family and I were devastated. I saw him one last time before he left. After my routine check up, he gave me a big hug and I tried (and failed) at fighting back my tears. What do I do now?? Who do I go to?? He called me a few days later with names of other neurologists that I could see, as well as his personal email. I researched the names to see what I can do - location, insurance acceptance, etc. I picked two - they both took care of me at Mount Sinai, so I knew they were good! One at Mount Sinai and the other closer to home in White Plains. I saw my doctor at Mount Sinai to set up my file - diagnosis, date of birth, etc, etc. I also made an appointment with the other in White Plains. I was happy to have a female neurologist and felt I would feel comfortable with her - SURE WAS! She recognized my name on her list of patients to see for the day and as soon as she saw me. I feel very comfortable with her and can speak to her like a girlfriend sometimes - cute guys, boyfriends, and school.
To date, my walking is not good. I have a pretty big gait and my face has introduced itself to the floor at work a number of times. For those who do not know me, I am very proud and HATE asking for help. I fought my neurologist for about a year about getting a cane. I first bit the bullet in January and got a handicap sticker. About 5 months or so later, I got a cane. My co-workers were in shock, and I receive the routine WTF and what happened to you every other day from others. My friends will look at me with sympathy in their eyes and sometimes that hurts more. I run a childrens club, my favorite part of my job. Before children would run up with cheers of MISS AMANDA!!!!!!! Now I see them hide behind their parents or shyly walk up to say hi.
After Another day of hobbling up the stairs and bawling in my room, pitying myself. My mother quietly knocks on my door and tells me I should join a support group. Scroll back up - I AM SO PROUD!! I did some research quietly on my own - unfortunately the local MS support groups are not for those that work during the day. I found this online support group and would appreciate any tips, tricks and words of encouragement!!