My name is Mileidys Wojciechowski. I am Cuban and I live in Florida, U.S.A. When I lived in Cuba in 1992, I saw a movie that impacted me greatly. The name of the movie was Lorenzo’s Oil. This film is based on true events. In this movie, the parents of a 5-year-old boy named Lorenzo, who suffers from a rare degenerative disease called adrenoleukodystrophy, which causes paralysis, find a treatment to at least relieve the first phase of this illness. When I saw this movie, I could never have imagined that years later, like Lorenzo, I would suffer from a rare neurological condition that could cause paralysis—Neuromyelitis Optica (NMO), which is considered rare because very little is known about it. which is considered rare because very little is known about it. Unfortunately, I do not have the daring or the knowledge of Lorenzo’s parents to look for a cure for this disease. However, I have the willpower to seek information about clinical trials (what other doctors have to say about these clinical trials), treatments, and gather more information from reliable and well documented sources, such as foundations, organizations, and medical sites that advocate for a cure for NMO and other neurological diseases. This is why I had created this site: https://neuromyelitisopticanmomistakenformultiplesclerosis.com/
This site had been seen globally from countries such as Singapore, Spain, India, China, United States, Canada, Colombia, Bolivia, Ireland, Australia, Ecuador and Brazil.
I translated this site in Spanish in a Facebook page that I had created together with the YouTube video of Michael Levy, MD, PhD about NMO. For those who do not know who Dr. Levy is, he works for the Johns Hopkins University School of Medicine in Baltimore, Maryland and whose main specialty is the immunopathogenesis of neuromyelitis optica spectrum disorder. This site in Spanish is:
After years of having episodes similar to M.S and being tested for it, I was misdiagnosed with M.S. I was receiving medication that would supposedly fight this disease. Nevertheless, rather than getting better, I spent years in and out of the hospitals for extended periods of time. The damage after every attack was worse every time. I could not walk for months. Meanwhile, my life was falling apart. As a relatively new immigrant, I was struggling financially to pay for my college degree. My job in a local BMW car dealer at the time did not pay enough to cover my health insurance.
Because of my health condition, numerous times I found myself with no money, no job, and no family (I was not married at the time, and my family lives in Cuba). I really hit rock bottom; I could not keep a job and I stopped my college classes numerous times. For a long time, my university could not understand that after my exits from the hospital I had a long recovery at home ahead of me. The university mainly justified my absences to classes while I was at the hospital. Therefore, when I could not finish a semester, they failed me automatically. Finally, they understood my situation thanks to the excellent support of the Office for Students with Disabilities of this university (now named Student Accessibility Services).
After having been in numerous local hospitals over the years with a wrong diagnosis and the wrong medication, a great doctor with a small practice (who was the first to tell me that I have NMO) recommended that I should get the rituxan treatment. Nevertheless, I ended up going to a hospital that I thought would be a better option for me. There, thank God, they gave me the right diagnosis, and I have been receiving outpatient treatment since then.