Tiffany

While in elementary school, Tiffany lost vision in both eyes. Not knowing what to do, Tiffany’s parents took her to see an eye doctor who prescribed Tiffany “a lot of steroids because he didn’t know what was happening, either.” After regaining her vision, Tiffany’s eye doctor stopped prescribing the steroids and her vision immediately worsened. Results from MRIs and blood tests confirmed that Tiffany had lesions on her brain. At first, Tiffany’s doctors thought that she had Acute disseminated encephalomyelitis (ADEM). However, after the lesions persisted, Tiffany was diagnosed with Multiple sclerosis (MS).

Following diagnosis, Tiffany was referred to a neurologist who “didn’t know what was going on.” Because there were no MS specialists close to their home, Tiffany’s parents took her to another city and eventually, another country where they found more resources and more options for treatment. However, the medications were not very helpful for Tiffany, and she returned to the United States. In the United States, Tiffany’s parents found a MS specialist who started her on treatment. Tiffany’s first MS treatment was Gilenya until the side effects became too much for her. She then started Tysabri until she became JC virus positive and started Copaxone for six years. Recently, she began taking a new medication, Kesimpta, a monthly injection. Tiffany also takes Lamotrigine to treat her seizures, Lexapro to treat her panic attacks and anxiety, and Vimpat to reduce brain waves at night. Tiffany’s MS-related seizures used to occur once a month but with the assistance of medication, she experiences a seizure once every few months.

The idea that she had a brain disorder filled Tiffany with fear, stress, and anxiety; she began to experience panic attacks. After experiencing her first seizure in seventh grade, Tiffany began to feel embarrassed to be in public. Since then, Tiffany has felt daily anxiety around embarrassing herself in public by having a seizure or panic attack. As a young person with MS, Tiffany feels that the toll MS has taken on her life is unfair because it restricted her from doing things she wanted to do at a young age. Even though she has learned to cope with MS, Tiffany “would do anything to wake up with no MS.”

Currently, Tiffany experiences headaches, seizures, migraines, fatigue, anxiety, impaired vision, memory loss, and weakness in her arms and legs. Tiffany recently experienced a relapse where she was diagnosed with optic neuritis and prescribed high doses of steroids until her vision came back. Tiffany worries that MS is going to control her life by restricting her ability to do the things she wishes to do such as traveling. As a result of MS, Tiffany has “become more scared to get attached to people” out of fear of judgement. Now, Tiffany completes tasks a lot slower than before due to memory issues, weakness in her body, worsened hand eye coordination, and pain. Tiffany’s parents and friends assist Tiffany in completing everyday tasks by helping her to remember or lending a hand when she does not have the physical strength. Even though her MS journey has been “a roller coaster of emotions,” Tiffany works hard to not let MS control her life and remains hopeful that new, better treatments or even a cure will become available.