I am a Captain of a very successful Walk Team on Long Island called “HopeDreaMS” raising over $100,000 over the past 8 years for research for a cure. Captain, Gene and I, co-ordinate fundraisers to raise funds and awareness to people who do not have knowledge about this debilitating disease. Today, due to research, there are numerous medications to slow down progression and tests to diagnose quicker. Our walk team consists mostly of people who live with MS. I am proud to say that we do accomplish our goals with pride. Gene and I make a good team and we lead our awesome team to fight to end MS. If there is any team who has the determination do that it’s Team HopeDreaMS.
I am 68 years old and have had MS for 42 years. Back in 1974, after my second child was born, my body didn’t feel quite right. I knew something was different but couldn’t pinpoint where my problems were coming from, so I ignored it thinking it was the after effects of the birth of the baby and the stress it put on my body. My GP at that time gave me tranquilizers to calm me down The next few days I experienced numbness, tingling and burning in my left arm and shoulder radiating into my fingers and then it all became numb. I went back to the doctor and again he told me to relax, hard to do when you are losing the use of your body limbs. At this point the numbness now was on the entire left side of my body. I was nervous, I had a three year old and a 6 month old daughter and now I lost the use of the left side of my body.
I went to the emergency room where I met a neurologist who put me through a series of tests (spinal tap, CAT scan and a cervical myelogram) and nothing was found. Remember. there was no MRI in 1974. After the myelogram, while the needle was still in my spine the doctor injected me with a steroid and then followed it with a large dose of oral prednisone decreasing it every day until it was completed. I remained in the hospital for a few days and unbelievably my body was getting back to normal. It was a like a miracle! I was now under Dr. H’s care at L.I. Neurology. He told me I contracted some type of virus. Go home, take it slow and go about my life as usual. I accepted that because my husband at that time checked everything out and did a lot of research and assured me that this was the case. However, I always felt like he was watching every single thing I was doing and asking me so many questions about how I was feeling. This went on for 5 years and then the day of my brother’s wedding in 1979 the same thing happened, this time it was quicker.
Back to the ER, another spinal tap, CAT scan and now I started asking a lot of questions. I thought I had a brain tumor. What was this strange virus that I had contracted? Dr. H had scheduled a consultation with me. My mother and husband came in my hospital room. I KNEW SOMETHING WAS WRONG. Dr. H told me that he was sure I had Multiple Sclerosis. I didn’t know what that was. Then he said that my husband knew this 5 years ago and didn’t want me to know because he didn’t think I could handle it. Boy was he wrong. You can handle anything once you know what your challenge is. I successfully head the best walk team on Long Island. I have made some wonderful friends, helped by the NMSS Long Island Chapter, and I enjoy my life. I am determined to fight this disease until we win!