Posted by: The Sumaira Foundation in NMO, Patient.e, TM, Voices of NMO
I was diagnosed with Neuromyelitis Optica in June of 2012 after two hospitalizations totaling 5 months, during which I lost all my strength, ability to move and all feeling from my chest down…My first symptoms, during August and September of 2011, were nausea and vomiting. Nowadays, I know that those are very peculiar characteristics of the illness it turns out I have, but at the time, I didn’t have any idea. I had recurring hiccups and threw up so much that I lost 17.6 pounds ultimately becoming debilitated. I visited many doctors and had many tests, but nothing was found. The doctors told me that my exams were all clean. Therefore, no one was able to figure anything out. In the same fashion the symptoms showed up, they slowly went away.
In October of that same year, I began to feel tingling in both feet, from the bottom of my soles to the top. On December 15 2011, my legs fell asleep below my knees. I spoke to a friend, a vascular surgeon, who told me that this type of dormancy was neuropathic. I saw a neurologist who examined me and told me that what I had going on was quite normal: symptomatic and idiopathic. Symptomatic because all I had were symptoms; idiopathic because he didn’t know what it was. He prescribed some medication and suggested that I return in two months. But the sleepy feeling in my legs was only getting worse.
Then, on February 9, 2012, an awful burning sensation started in my feet traveling up through my body forcing me to go to the emergency room. I asked the attending medic to call a neurologist because I knew something was terribly wrong, but she said that she could only call the neurologist in extreme cases and she refused to call him. I argued that she couldn’t possibly know what was going on with me or what the problem was, so how could she determine that I wasn’t an extreme case? But she was intractable! All I got from her was an analgesic to relieve the pain and a medication to calm me down. Then she gave me a medication for varicose veins! Three days later, I returned to the ER because of urinary retention. I went an entire day without being able to pee and could barely walk.
But this time, God placed an angel in my life. The doctor who saw me, admitted me to the ICU to investigate the cause of my problems. During that first hospitalization, I lost my ability to move shortly after being admitted. I was given pulse therapy along with Solumedrol and gradually I regained movement. During the first 33 days in the hospital, I had several diagnoses: myelitis, idiopathic myelitis, transverse myelitis, and myelitis due to a lack of Vitamin B12. Despite being in a lot of pain, I was released. None of the nine doctors who treated me at the hospital listed nausea and vomiting as a symptom of the disease they had diagnosed. As a matter of fact, they did not even pay attention to those symptoms. Once home, I continued with pulse therapy and improved, such that I was able to stand and take a few steps, with the help of a walker and a physiotherapist.
Almost a month after I stopped pulse therapy, I again felt neck pain radiating to my arms. The doctor, whose diagnosis had been myelitis due to lack of vitamin B 12, said that the pains were likely from the mattress and pillow, that I was lying down for long periods of time and that I would need to replace vitamin B12 for the rest of my life. He gave me permission to go back home. There, over ten days, the pain got worse and worse, until I was paralyzed from my chest down. I returned to the hospital. A private doctor took up my case. I had new pulse therapy and plasmapheresis. The inflammation almost reached the brain stem. For this reason, I stayed in the Neurological ICU for 18 days, plus 43 more days in the hospital, at which point I was released once again. One week later, after a relapse, my doctor rushed me back to the ICU. I was given a new pulse therapy, and I started treatment with azathioprine and an oral corticosteroid. This time, the doctors suspected Neuromyelitis Optica (NMO) also known as Devic’s Disease, though I had tested negative for the anti-aquaporin-4 biomarker and did not present anything in the optic nerve. At the end of May, I went to the Sarah Hospital in Brasilia, which specializes in neuro-rehabilitation, when for the first time, a doctor related the nausea and vomiting that had occurred last September to my other symptoms. I came back home in August 2012, after almost 6 months of being in the hospital, still paralyzed from my chest down.
That’s the clinical report. My own report is of tranquility and certainty that even with all that has happened to me, nothing happens just because, but because God has a plan. Through all of my hospitalizations and the five years since my diagnosis, I have never despaired or even asked why this was happening to me, because I was sure that God wanted something from me. With that faith, it was much easier to handle all of these transformations.
When people ask me how I am, I reply, “Well! Every day a little better!” And I really believe that because I am a firm believe in the power of energy and words. We need to want and work for our improvement. Today, I am much better than I was give years ago. I have more strength and less pain and I can even stand for a few seconds without the use of orthoses! I do not walk yet but I know it will happen sooner or later. I play tennis in my wheelchair, do physiotherapy in the pool, and I participate in Pilates and bodybuilding. Every day, I try something new, trying to overcome in my own body and go beyond! And I count on a team of angels sent by God to help me – my son, mother, father, sisters, brothers-in-law, family, and friends.
Because NMO is an inflammatory disease, in order to avoid new outbreaks, I eat an anti-inflammatory diet and have completely removed from my menu those products considered inflammatory such as milk, gluten, and sugar. I noticed the biggest improvement when I stopped eating white sugar. I gave up cakes, sweets, candy, boxed juice, etc. and noticed an improvement in both disposition and pain. On top of that, I lost weight! It was certainly not my intention but getting thin was great! I was taking 25mg of corticosteroids daily and had swelled up quite a bit. Eliminating sugar helped me get back to my previous weight after 5 years!
Finally, because I believed that God was making me go through all this for a reason, I talked to Him and asked what He expected of me. It was then that I came up with the idea to create the “Menina Coragem: blog (Courageous Girl in Portuguese). The blog encourages people with or without disabilities in going through daily challenges of life. After all, we all have several daily challenges and it is up to each one of us to decide how to face them. You can follow me on www.meninacoragem.com.br and on Instagram/Facebook @meninacoragem
– Daniele Americano Rio de Janeiro, Brazil
Edited by Gabriela Romanow August 28, 2017
