Voices of NMO

Tell Your Story

Shekita’s NMO Story – Disabled yet Stronger than Ever

My name is Shekita Green and I have neuromyelitis optica. I am the mother of two teenagers, the wife of an Army vet and an entrepreneur. In my “past life”, I was a person who was heavily obsessed with working. I don’t know what it was, but work gave me life. No one should have… Read More

Mamiko’s NMO Story – Opera, NMO and New Adventures

Born and raised in Tokyo, Mamiko Sakaida always loved singing and wanted to become an opera singer. In pursuit of her making her dreams come true, she studied opera in Bologna, Italy, where she trained with the best of the best in her industry. Mamiko’s life suddenly and drastically changed in 2016 when she became paralyzed from… Read More

Christy’s NMO Story – Being Heard Makes All the Difference

My name is Christy and I’ve been fighting this disease without knowing what I was up against since before 2008… I started calling this thing my “venom” because it reminded me of a venomous character that took over my entire being without letting go. My venom’s name is NMOSD (neuromyelitis optica spectrum disorder). It relentlessly… Read More

Jarrie’s NMO Story – In Loving Memory of Donna

Jarrie grew up on a farm and declares himself a simple man. I think otherwise. I think Jarrie is a man for whom love is simply enough. Jarrie married his high school sweetheart, Donna, on Valentine’s Day in 1975.  She died on New Year’s Day in 2021.   Donna’s health began to deteriorate when she contracted… Read More

Shanice’s NMO Story – Caffeine Withdrawal or Something Serious?

My name is Shanice. I was born and raised in Jamaica and now reside in Toronto in Canada. I am a second-year medical student aspiring to be a physician in obstetrics/gynecology. I have always considered myself to be a very healthy individual with a very pepping personality. When I started medical school in 2017 in… Read More

Tiffany’s NMO Story – Navigating the Navy with NMO

Tiffany was a military brat with both of her parents serving in the Navy, so joining up herself seemed the obvious choice for her. She enlisted in 2006 and met her husband on board a Navy ship in 2009. It was where she was meant to be. Tiffany was stationed in Suffolk, Virginia in January… Read More

Mary Lou’s NMO Story – Learning & Sharing NMO

  My name is Mary Lou Gallegos. I was born and raised in San Antonio, Texas. I am the co-owner/founder of SA Perks L.L.C Detox Juices and Tonics. I am the mother of four amazing children as well as a step daughter. In addition to that, I have four adorable grandchildren. I am a wife… Read More

Paige’s NMO Story – A Baby & A New Diagnosis

My NMO journey started just a few weeks after having my first baby girl in August 2020. Being a first time mom, I had no idea what postpartum should look like therefore, some of my symptoms in the moment were overlooked and hard to tell what was actually happening! About 5 weeks after having my… Read More

Nell’s NMO Story – My Hospital Story

My first NMO symptoms hit three years ago when I was 9; I’m 12 now. To be fully transparent, I don’t actually fully remember that time very clearly. In January 2018, after having a blast skiing in Steamboat, Colorado with my family, I woke up with extreme fatigue, nausea, and dizziness. Previously, I was an… Read More

Bella’s NMO Story – In This Family, We Fight Together

August 29, 2017 will forever be embedded in my mind because it was the day my 9 year old daughter, Bella, woke up sick. It was the day that would change our lives forever… We had just finished a great weekend moving my oldest daughter, Estrella, into her dorm for her first year of college,… Read More

Kristen’s NMO Story – Changed for the Better

I am no stranger to rare diseases. At 17, I was diagnosed with Toxoplasmosis. At 22, Phyllodes tumors. Chiari Malformation I at 26. It was not until 2017, when I received the diagnosis of neuromyelitis optica that my life was changed… In early 2014, I moved into a new desk at work. This new desk… Read More

Matthias’ NMO Story – The Gift of Support

The first time NMO hit me was on the evening before Thanksgiving in 2010… I clearly remember it because  my wife and I were on holiday in the United States. While standing in the brightly lit Times Square in New York City with flashing lights coming from every angle, I had to cover my left… Read More

Joanna’s NMO Story – The Differential Diagnosis

The differential diagnosis: It is a skill we learn early in medical school and it is designed to guide the clinician on considering the possible underlying causes of a patient’s symptoms. A good differential diagnosis includes possibilities of each category: neurologic, cardiac, hematologic, infectious, etc. We are taught that the best physicians approach a patient’s… Read More

Allison’s NMO Story – Keep on Keepin’ On

My name is Allison and I am a married, busy mom of three children (17, 12 & 12 years old). My NMO journey started approximately seven years ago, when I was dealing with my husband’sunexpected open heart surgery and the passing of my mother… My body just wasn’t right; everything was off and out of… Read More

Nicole’s NMO Story – A Woman Who Never Stopped Trying

Nicole was a first-grade teacher and chorus director in a Title 1, low-income school district, where she was a beloved, appreciated, and award-winning professional…    In May of 2017, Nicole thought she had pink eye, got antibiotics, and went to school. On a Friday, she taught, directed a chorus concert, and saw her mother later in… Read More

Ryan’s NMO Story – NMO is my New Normal

My name is Ryan. Three years ago, I was living the dream. I was happily married to my best friend, and we have three beautiful and perfectly healthy children.  We all lived together in our new home in Westwood. For the past seventeen years I worked for what is now called Eversource Electric, the largest… Read More

Anthy’s MOG Story – Advocating for Answers

It was the Friday before Halloween in 2018. Anthy was on her way home from work when she called her husband to see if she needed to pick up anything on the way home. She heard him crying, telling her that his mother, in Greece, had just been diagnosed with cancer. Instantly, she felt a… Read More

David’s NMO Story – Father of a Survivor

When your daughter suddenly goes blind in one eyes, you feel helpless. When the doctors don’t know what it is or why it happens, you feel frustrated. When this happens in the midst of your divorce, you wonder if the stress of the situation caused the problem.  So you do your best. You encourage your… Read More

Daniëlle’s NMO Story – Watch This Space

On the evening of Sunday, 17th January 2010, my mother was putting up a fight with my brothers and I to go to bed while we were chasing each other through the house. We had school the next day; I was 12 years old at the time. At 4am the next morning, I woke up… Read More

AnneMarie’s NMO Story – Proof of my Strength

My name is AnneMarie and my journey with NMO began in 2002 when I was just 16 years old… One April morning, I woke up with a stabbing pain in my lumbar spine which was getting progressively worse. My mom rushed me to the local emergency room where they had taken x-rays and done bloodwork…. Read More

Jaime’s NMO Story – Finding My Happy Place

My name is Jaime. I live in the small town of Exeter, Pennsylvania. I am a wife and a mother to a beautiful and healthy 15 year-old daughter. And I have NMO. I’ve been paralyzed from my waist down three times. I’ve lost my eyesight due to multiple bouts of optic neuritis attacks that have… Read More

Megan’s NMO Story – Your Average Girl Living in a Chronic Illness World

My biggest fear in life was that I would have some incurable sickness or disease. Not heights, nor spiders, nor public speaking. It was getting sick. Both of my parents had a myriad of physical and mental illnesses throughout my whole life, which seemed to be getting worse as the years went on. My mother… Read More

Ron’s NMO Story – NMO & Me

Today this is where I am – right here and right now. God has a plan, yesterday is gone and tomorrow may never be – It’s up to me as to how I make the best of it. Much, much more of the story of “NMO & Me” to unfold, as Dr. Will Meador, one… Read More

Kellin’s NMO Story – One Step at a Time; The Journey Starts Here

My name is Kellin. I am a 28-year-old South African NMO patient and this is my story… Late in 2015, my father suddenly passed away. It was a shock to my system and I was not prepared for it.  In the months/years to follow, I experienced weird symptoms – which I now know were due… Read More

Lexi’s NMO Story – Shaping My Identity

Freshman year of college is a time to form your sense of identity, but when I started school, I thought that forming this ‘new’ me meant dying my hair blue, not being diagnosed with neuromyelitis optica…  On the night of September 27, 2017, I stayed up all night in my small dorm room coughing, with… Read More

Maureen’s NMO Story

Maureen is a nurse. She worked in neurocritical care at Johns Hopkins Hospital for many years before she had ever heard of NMO. But in 2007, shortly after Dr. Benjamin Greenberg joined the faculty at Johns Hopkins, he recruited her to work with him in neuroimmunology. It was there that she first came into contact… Read More

Mitchel’s NMO Story – Stronger Than Strong

My name is Mitchel Navarro. I’m 34 years old, a wife, and a proud momma to two beautiful children – a girl and a boy. I have a bachelors degree in elementary education and was a teacher when this journey began. My days would begin at 5 AM and I’d finally be able to crawl… Read More

Jean’s NMO Story – A Modern Medical Miracle

Sunday 15 December 2013, on a friend’s farm in the beautiful little town of Dullstroom in Mpumalanga South Africa, started as blissfully peaceful as it sounds. This was to change from around noon that day when I started experiencing severe headaches and bouts of dizziness. I initially thought it was hay fever or something like… Read More

Chasity’s Story – It Started with a Headache

It started with a never-ending headache… Click the image below to watch Chasity’s video in which she describes her experience with optic neuritis. Although she has lost a significant amount of vision, Chasity believes that everything happens for a reason and is grateful to still be able to see her children every day through her… Read More

Lelainia’s NMO Story – 30 Years with the Wrong Treatment

I can trace my first NMO symptoms back to when I was just 12 years old… I’d be walking down a flight of stairs and for a split second, it was as if a switch had been thrown, cutting off communication between my brain and my legs and I’d fall down the stairs. Sometimes I’d… Read More

Letitia’s NMO Story – Strength Gained from the Madness Survived

My name is Letitia and I am a 22-year-old South African NMO patient. My story began on the 26th of December 2017, Boxing Day… I had been suffering with an excruciating headache for the last 2 days. I eventually noticed that I also had trouble with my peripheral vision. After some online research, I came… Read More

Julie’s NMO Story – Tingles & Tinkles

Five years ago, my oldest daughter and I were grocery shopping when it occurred to me that the grocery store looked foggy or smokey. When I asked her if she thought it looked the same, she gave me a “you’ve lost your mind” look. By the next day, my vision was gone in the left… Read More

Ronae’s NMO Story – God & NMO

It was December 2019. I struggled almost every day with tension headaches (eyes and nose). My primary care doctor suspected I had migraines and prescribed me with migraine medication. I don’t like taking medication (never have) and stopped taking the pills after two days. I chose to fight the headaches… On Christmas Eve, I noticed… Read More

James’ NMO Story – Bumpy Road to a Diagnosis

Hello, my name is James. I am 24 years old. I am a recent college graduate, a skateboarder, a geek, a lucky dude with an amazing family and friends. If you don’t get the opportunity to let me bore you by telling you about those things, you could probably look at me and just assume… Read More

Donna’s NMO Story – You Are Only Dealt What You Can Handle

It was March 2009. I was 39 years old. One morning, I woke up feeling significant pressure behind my left eye. I felt it mostly in the right corner of my eye, but assumed it would go away as quickly as it came. After a day or two, I thought it could be a sinus… Read More

Addie’s TM Story – Blessed to Call Her Mine

Addison “Addie” Havens was a healthy two year-old little girl full of energy and spunk who loved to play with her big brother… The weekend of January 29, 2016 began like any other but shortly after, Addie came down with a fever. We monitored it and were able to keep the fever down with Tylenol…. Read More

Virginia’s MOG story – A little child shall lead them Isaiah 11.6

Virginia was only 10 when, while checking the mail one day in April, she noticed a grayness in her vision, “like leaves creeping up from the bottom of my eye.”  The strange phenomenon went away in a few minutes. Her mother, Kimberlie, attributed the problem to Virginia’s allergies. But when the vision problem returned, they… Read More

Dominic’s NMO Story – Guided Through the NMO Storm

On December 25, 2018, we finally received answers and a diagnosis after Dominic became ill on November 19th with what we thought was a bug that was going around his school… He was taken to Children’s Hospital twice in one week because he wasn’t getting any better with his symptoms. A couple of days passed… Read More

Patty’s NMO Story – Is It MS or Could It Be Something Else?

I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages the optic nerve causing vision loss. A small black dot, obstructing the vision in my left eye turned into complete blindness in that eye in a matter of days. While admitted to Upstate University Hospital… Read More

Lisa’s MOG Story – Using Writing & Crafting to Cope With Chronic Disease

It was the late 1990’s. I was in my 30’s had constant pain down my left arm, and even though I couldn’t tie the symptoms down to any single event, my orthopedic surgeon had me on the surgery schedule assuming I needed a spinal fusion to fix a slipped disc. Then my MRI results came… Read More

Savannah’s NMO Story – I’m Done Apologizing for Not Showing Up

I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind and feel throbbing pain everywhere… I was diagnosed with Neuromyelitis optica (NMO) also known as Devic’s disease (similar to MS) last month after my MRI scans showed optic neuritis and brain lesions — and it’s completely shattered… Read More

Theresa’s NMO Story – Facing One Day at a Time…

Imagine this: You’re driving on a highway, and suddenly, your hands stop working completely.  You can’t grip the wheel. Imagine the terror and the confusion… And then imagine, that, thank goodness, your husband is in the car with you and takes over driving before you get into an accident. You assume something crazy happened and… Read More

Catherine’s NMO Story – Life Is My Marathon

Life before NMO – I was an active mom, worked as a home health nurse case manager and an avid marathon/half marathon runner… Before work, I would wake up at 4:30 am most mornings and meet my running buddies for a six mile run. On Saturday’s, we would do our long runs which were 13-21… Read More

Veronica’s NMO Story – NMO Benched Him but Faith Keeps Him Swinging #MayberryStrong

My name is Veronica and this is my NMO story. I am not a patient but a mother/caregiver of an NMO patient. I have always been in a way, made fun of because I am THAT parent. You know, the one that takes their kids to the doctor for anything and everything. I thank God… Read More

Sherry’s NMO Story – From Caregiver to Needing the Care

My name is Sherry. My experience with my disease is a little different and backwards… I was taking care of my father who had MS for many years and experienced sporadic health issues but never at the same time. I began to notice that these issues were becoming increasingly worse, with more signs and symptoms… Read More

Amanda’s NMO Story – Physical Strength Gets You to the Start Line; Mental Strength Gets You to the Finish

Back in 2013 and 2014, I completed two 100km walks to raise money for Oxfam – something I am so proud to have done! BUT in 2016, when I tried to do it a third time, I trained right up to walking 50km in a day however, I was suddenly unable to sleep, to stay… Read More

Julia’s Story – Early Signs of a Rare Disease

Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody-Associated disease, or MOG-Ab disease, I have met others who are afflicted and have listened to their stories.  They all start similarly, with an acute attack, out of the blue, and always marking the start of an unexpected turn in health. My story is different…. Read More

Shantrice’s NMO Story – A Fear You Just Can’t Break

It all started when I was 20 years old – I went to urgent care because I was experiencing excruciating pain in my upper back to the point of tears. The urgent care team told me that I had a urinary tract infection and sent me home with a prescription for it. Two days later,… Read More

Katy’s NMO Story – The Making of a Warrior

This is a story of how a warrior is made. I have been gifted with the job of being this warrior’s mother and I am proud to share her story. This is the story of a smart, beautiful, strong, athletic, healthy 12 year-old who suddenly was thrown into battle – a battle with fear, unknowns,… Read More

Maurita’s NMO Story – Working Hard & Working Through

She thought it might be her fault. After all, she was working 14-hour days driving a truck, going to school full time and caring for a young son on her own…   In 2008, Maurita suffered a bad stomach virus, but she worked and studied through it.  Almost a year later, it happened again, virulently enough… Read More

Chelsey’s NMO Story – Sister & Scientist

Chelsey Judge, PhD, is a scientist with a particular interest in immunology. She also happen to be the sister of an NMO patient. Chelsey shares her Voices of NMO™ story from the perspective of a scientist, sibling, and scientific advisor to one of TSF for NMO’s partners, The Connor B. Judge Foundation, based in Cleveland,… Read More

Danielle’s NMO Story – Sending Spoons

April Fools’ Day jokes are supposed to be funny. However, the one my parents thought I was playing two years ago, was most definitely not. I’m not pulling your leg either when I tell you, on April 1, 2016, I woke up completely blind in my left eye. Let me pause for a moment and… Read More

Chelsey’s NMO Story – Vision Without Sight

In February 2019, I received an NMOSD diagnosis after nearly 11 years of being treated for multiple sclerosis… I think when you are diagnosed with a chronic disease, knowing who you are is critical to how you move forward with living the life you want to live. With certainty, I can say that I live… Read More

Eleanor’s NMO Story – A Lucky Beach Girl

Is it unreasonable to call a woman who comes down with a rare autoimmune disease lucky? What about two autoimmune diseases? It may seem strange, but Eleanor considers herself lucky. With her children still in high school, her elderly parents needing her care and working a full- time teaching job, Eleanor didn’t have much time… Read More

Nicki’s NMO Story – Taking on NMO One Day at a Time

While 2018 came ringing in with optimism, I was back in school getting my business degree and making moves to start a daycare center for children with special needs. I was working long hours with a successful home daycare that allowed me to be an active parent with my children at home. I had a… Read More

Leah’s NMO Story – Resilience Through Life’s Interruptions

Before I begin, I would like to thank you and tell you how much I appreciate you taking the time to read about my journey with neuromyelitis optica. Prior to embarking on this journey, I was a normal, healthy, active child. I enjoyed reading, swimming, skating, skateboarding, bicycling, playing tennis, and riding horses. I enjoyed… Read More

Greg’s NMO Story – Making the Choice to Thrive

According to all of his medical tests, Greg is negative for both multiple sclerosis (MS) and neuromyelitis optica (NMO).  Like many people misdiagnosed due to similar symptoms, Greg was considered an MS patient and treated for years by self-injecting the interferon, Rebif.  His symptoms were on-and-off numbness in his limbs… His relapses were successfully treated… Read More

Shiela’s NMO Story – Battling NMO in the Philippines

Greetings Everyone, I’m Shiela Marie Sta. Maria Rutaquio, from Binangonan, Rizal 1940 Philippines, who have this rare and incurable autoimmune disease called NMOSD (NEUROMYELITIS OPTICA SPECTRUM DISORDER), a demyelinating disease mostly mistaken as MS or Multiple Sclerosis, same symptoms but different treatments to manage it. I’ve been diagnosed since July 31, 2018, which commonly known… Read More

Dr. Farrah Mateen’s NMO Story – A Global Perspective on NMO

Like many physician-researchers in my field, I spend a lot of time thinking about NMO, both inside and outside of the clinic. The science of NMO is fascinating to me and I have been very excited to see how much the field has changed over the past decade. I have been inspired by many patients… Read More

Christy’s NMO Story – Conquering Every Day with NMO

My NMO story started about 15 years ago. I was a sophomore in high school and was just released for summer break… The very next day, I started to feel ill. I was throwing up uncontrollably. It started with just a few times a day, and suddenly I was throwing up or dry heaving 12… Read More

Arlena’s NMO Story – Still Breathing

I was a 26 year old working in the Pentagon in the Navy Executive Dining Facility. I was Active Duty Navy for almost 8 years… On October 18, 2017, I had a colonoscopy because I was losing weight, bowels had blood and mucus coming out. After that, I start having a tingling in my thighs… Read More

Joyce’s NMO Story – I Am An NMO Warrior

Hello! My name is Joyce and I am from Pittsburgh, Pennsylvania. My NMO symptoms started with loss of bladder control, stress inconvenience, irritable bowel with constipation, and sensation loss in my legs and arms. I also experienced severe migraines. Some of my migraines for last for days.  I would see spots, have blurred vision, and… Read More

Ilene’s NMO Story – Lessons Learned; Resilience Cultivated

I’m Ilene, the youngest of seven children.  I come from a family of school teachers and musicians. I love board games, musicals, plays, happy movies, skeet ball, Tower of Terror and having other people cook for me. My dream life was to be a pianist, a teacher, get married, travel, have children, be the fun… Read More

Pam’s NMO Story – How NMO Reinforced Positivity

On Monday morning, Pam had a headache. For a woman who never got headaches, this was notable.  In addition, when she turned her eyes right and left, she experienced eye pain. She took some ibuprofin, and went to the office, where she worked as a dental hygienist.   On Friday, Pam had an existing appointment… Read More

Marie’s NMO Story – Stronger Than You’d Know

Nothing can fell Marie. No matter the punches that NMO throws, Marie just gets up again and keeps on going. A strong young woman who has learned to live with blindness and many years in a wheelchair, Marie, now 26, has been living with NMO since the age of 14. Like for so many young… Read More

Jamie’s NMO Story – Holding on, even if a little too tight…

Jamie was diagnosed with Non-Hodgkins Lymphoma at the age of 35.  Her condition was such that she didn’t need treatment, just monitoring. She was even healthy enough to have a second child. After the birth, though, she was put on Rituximab for the lymphoma, once a week for four weeks. Two years later, one night… Read More

Maureen’s NMO Story – NMO & My Life

This disease began with hiccups and vomiting 25+ times a day. I was certain that I had gotten food poisoning or had the flu. Later, I learned that things would get much worse before they got better.  I could no longer work because it was difficult for me to even get out of bed. After… Read More

Avery’s NMO Story – Racing Against NMO

My entire life, I was always a healthy and energetic person… I have played tons of sports and never went to the doctor unless it was for a sports physical. I found joy in all of life’s beauties but I really fell in love with running. I joined as a sophomore and not only did I… Read More

Sumaira’s NMO Story (from The Transverse Myelitis Association Blog – In Their Own Words”)

Sumaira’s NMO Story From the Transverse Myelitis Association blog, In Their Own Words (October 4, 2018) My name is Sumaira and I am the founder and executive director of The Sumaira Foundation for NMO and Miss Bangladesh-USA 2015. Thank you for taking the time to read my story. It all started in June 2014. I was a perfectly… Read More

Phil’s NMO Story – A Journey to a Diagnosis

Here is my story of how I was diagnosed with Neuromyelitis Optica and just how scary it can be knowing that something is wrong but not being able to find out what that something is.  I am not one to share my emotions.  The last 15 months have harbored some of the scariest times of… Read More

Dr. Tracey Cho’s NMO Story – Teaching Future Neurologists That NMO is a “Do Not Miss” Diagnosis

My name is Tracey Cho. I am a neurologist and a teacher. I specialize in autoimmune and infectious neurology, treating diseases like NMO, NMDA receptor encephalitis, HSV encephalitis, chronic meningitis, and neurosarcoidosis. I have also been a clerkship director (teaching medical students neurology) and residency director (mentoring neurologists in training). I have spent most of… Read More

Paula’s NMO Story – A Walking Miracle

  Paula is a walking miracle. She looks good, feels good and can do most everything she ever did in her life, though she is now eligible for senior discounts. Paula has NMO. Lupus. Hashimoto’s Disease. Sjogren’s Syndrome. Raynaud’s Syndrome. Postural Orthostatic Tachycardia Syndrome (POTS). Fibromyalgia. When she was just 15, Paula was diagnosed with Idiopathic thrombocytopenic… Read More

Kelly Ann’s NMO Story – Saving My Own Life

Meet the happy workaholic, Kelly Ann, an ambitious business + LinkedIn coach, podcaster and luxury brand consultant from California who candidly shares the ups and downs of her NMO story and the importance of dedicating your time and energy towards saving your own life. To learn more about Kelly Ann, visit www.kellyanngorman.com

Julie’s NMO Story – Transforming Curses Into Blessings

Julie has had NMO for at least a dozen years.   From before and since that time, she has been diagnosed with a number of other conditions.  She has been knocked down, again and again, and has always picked herself back up. She is one strong woman.  As a mother and grandmother, Julie knows that… Read More

Robin’s NMO Story – Living in the Moment with NMO

I was diagnosed with Neuromyelitis Optica on July 25, 2015.  My story is a little different than many of the stories I’ve heard or read about because my symptoms started only 11 days earlier.  I had a fever and began to have pain in my hands.  Over the course of the next few days, my… Read More

Liz’s NMO Story – In Orbit, Flying High

  Liz has had NMO for 25 years now.  She’s only known it for ten… Since she’d had migraines throughout her childhood, Liz and her mother didn’t think too much of it when, at age 11, the “migraine” around her left eye was so bad that she thought she needed glasses.  But obligingly, her mother… Read More

Betty’s NMO Story – The NMO Monster

In October 2015, as I was traveling to Oklahoma to visit my sister, I developed a deep gray-teardrop-shaped spot in my right eye which increased after I arrived. I mentioned this to my sister as it was odd I could see around this shape. There was a little soreness and my eye was slightly itchy…. Read More

Dr. Weinshenker’s NMO Story – Witnessing the Transformation of Neuromyelitis Optica

My name is Brian Weinshenker and I am a neurologist at the Mayo Clinic in Rochester, MN.  I established a career as an MS specialist and have had an interest in conditions that mimic MS and issues relating to the accuracy of MS diagnosis.  Neurologists have no specific tests for MS; a diagnosis is established… Read More

Ann’s NMO Story – Not Letting NMO Stop Her

Ann and her husband were at the seaside, collecting seaweed to use in a kitchen garden they were digging.  Ann noticed a tightness in and around her chest, but assumed the hard work was causing the strange sensation.  The tightness, like a band around her body, lasted for a few days.  Ann went to the… Read More

Jeanette’s NMO Story – Surviving Since Birth

My name is Jeanette McCourt from Arizona and I was diagnosed with Neuromyelitis Optica on June 1, 2016. This diagnosis did not come easily or quickly. I had multiple diagnoses including Lupus, Rheumatoid Arthritis, Fibromyalgia, Sjogrens, Raynauds, Paresthetic Neuralgia, Occipital Neuralgia, Hashimotos, Thoracic Outlet Syndrome, and Multiple Sclerosis! PHEW! I was honestly exhausted and beaten… Read More

Arif’s Story – Becoming Stronger with TM

My name is Arif and I am from Jhansi, a historic city located in the northern part of India. This is my TM story… I was in my final year of pursuing an MBA (Masters of Business Administration) at Pioneer Institute of Professional Studies (PIPS) in Indore when it all happened. In August 2010, I… Read More

Ria’s NMO Story – Stronger Than You Know Fighting NMO

Recently, Ria’s mother’s blood pressure climbed dangerously high.  Her father is scheduled for a triple bypass later this week.  It’s been an unusual few months for a woman who has been on the other side of the hospital bed more frequently than not for the last five years. Ria has risen to the occasion. Because… Read More

Daniele’s NMO Story – MENINA CORAGEM (Courageous Girl)

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… Read More

Kia’s NMO Story – Deciphering my Diagnosis

The Diagnosis My NMO journey started after my 29th birthday in January 2016. I had a headache that would not go away. It was unlike anything I had experienced before. At the time I had just embarked on a new semester in law school. Everyone around me thought it was just law school stress. The… Read More

Dionne’s NMO Story – Journey to a Diagnosis

Meet Dionne, a vibrant 46-year old, former nurse, mother of 2 from New Orleans, Louisiana who has been living with NMO since 2009. Click below to watch Dionne share her NMO journey, what/who inspires her, and words of encouragement! Published July 14, 2017

Megan’s NMO Story – Coping via Cosmetics

Meet Megan, a 16 year old NMO patient who and YouTube sensation (@PerfectlyKnitBeauty) who has been coping with her chronic illness through the use of makeup. We laud her courage, wisdom, and incredible strength. Be inspired with the video below! Megan’s story marks our 20th Voices of NMO story and the 1st video submission. To… Read More

Lillian’s NMO Story – Living For Her Family

She thought she had a bad sunburn… Lillian had gone camping with her daughter and her Girl Scout troop in September of 2015.  When she returned home, her shoulders and arms burned, but strangely, had not changed color.  The burning sensation lasted for months.  Lillian was in severe pain, and felt as if her body… Read More

Angela’s NMO Story – From Managing Retail to Managing Vision Loss & Paralysis

I was diagnosed with NMO on March 10, 2015… An MRI that was done while I was receiving inpatient care for sudden paralysis of my lower limbs showed a spinal lesion on vertebrae C4 through C6… After all the unanswered questions, frustration, doctors appointments, blood work, imaging, crying, and terrifying Google searches, I finally had… Read More

Adam’s NMO Story – Narrated by The Love of His Life

My name is Jamie and I am Adam’s partner of 17 years. This is Adam’s NMO story from my perspective… Everything was perfect in our lives;  Adam had a good job and we were looking for our first home to purchase with our two young sons. Things could not have been any better…. Adam’s story… Read More

Matt’s NMO Story – Driven for His Daughter

With respect to the patient’s desire to remain anonymous, we will refer to him as Matt.  It started along with a very bad cold in late 2011.  Eye pain and some vision loss.  Matt went to an ophthalmologist and felt scared, for the first time, watching the concern suddenly grow in the doctor’s eyes as she… Read More

Max’s NMO Story – The Luckiest Kid in the World

On a warm February evening at the University of Miami, I sat in my Music Business lecture and wondered from where this strange soreness had come. There was a lingering discomfort each time I moved my left eye from side to side or up and down. My eyes had never been an issue and this… Read More

Dr. Michael Levy’s NMO Story – A Physician’s Quest to Find a Cure

I was an on-call intern late one night at the Johns Hopkins Hospital when I met a young woman who presented with weakness and pain in her legs. This was her third admission to the hospital in the past 6 months despite her doctor’s best effort to treat her for multiple sclerosis (MS). “I don’t… Read More

Heather’s NMO Story – Determined to Overcome

Something Wasn’t Right I was the perfect example of the shiny student off to bigger and better things from the small country town where I grew up. I had a very bright future ahead of me. It was my last year of high school, and I was cramming in as many courses into my workload… Read More

Deanna’s NMO Story – Choosing Resilience

February 1st, 2011 – I began having vision problems in my left eye and a few days later, it got drastically worse. I went to the Mass Eye and Ear Infirmary’s ER and was diagnosed with Optic Neuritis. With time, it got a little better but by the end of February, my legs started feeling tingly, numb,… Read More

Keri’s NMO Story – New Baby & New Diagnosis

I have never been a person that likes to sit still; I don’t even like going to the movies.  If it was up to me, I would run from location to location so that I can get there faster.  I was a runner in high school, in college and I have completed 4 marathons, qualifying… Read More

Elizabeth’s NMO Story – Mind over Matter

My life changed eleven years ago when I was diagnosed with NMO. To this day, I still have moments where I reflect back on my story and feel every ounce of emotion I felt during my diagnosis. However, over time, I have been able to adapt to my so-called normalcy after being an active teenager… Read More

Adria’s NMO Story – Juggling Law & Autoimmune Diseases Like a Pro

Since she already had been diagnosed with lupus, Raynaud syndrome, and Sjogren’s syndrome, Adria didn’t think much about the tingling in her hands that started in February of 2016.  Besides, she was far too busy to pay attention.  Adria was working full time as a paralegal and going to law school in the evenings. The… Read More

Heather’s NMO Story – Always Fighting

I was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) in November 2013. My symptoms started June of that year with my toes going numb, shortly after returning from a cruise I took for my 30th birthday. Unlike most others, I was actually looking forward to turning the big 3-0! As the month went on, the… Read More

Adelaide & Joe’s NMO Story – A Husband & Wife Perspective

ADELAIDE Her mother, dying on the bed next to her, asked Adelaide for a sip of water.  As Adelaide moved to get up, the left side of her body felt numb.  She managed to rise, but as she and her sisters went to lift their mother’s head, Adelaide dropped it back.  What the heck was going… Read More

Ashlee’s NMO Story – A Fighter for her Family

My name is Ashlee. Thank you for taking the time to read my story. I’m not really sure where to begin and I’ve never publicly shared my NMO story before but, here it goes… In 2004, about six weeks after giving birth to my son, I developed my first symptom. One morning, I woke up… Read More

Brittany’s NMO Story – An Unsung Heroine

One morning in October of 2013, I remember feeling a sharp pain in my right eye when I would try to read and the letters were very blurry. It was in the midst of a very busy semester of in college, so I considered it to be a symptom of long hours of studying, hundreds… Read More

Nick’s NMO Story – A Mother’s Perspective

In early November 2000, Nick came down with viral symptoms. He was just done eating dinner when he vomited across the kitchen – I was shocked. Up to this point he was a healthy 23 month old who was active, talking and above average in his skills and was never sick a day in his… Read More

Tanishia’s NMO Story

Neuromyelitis Optica – a rare disease that appeared out of the blue and had a mission to suck the life out of my dear sister. At first we thought that it was Multiple Sclerosis, at least that’s what the doctors said. NMO was and still is a new phenomenon. This is why many, including my… Read More

Sinead’s NMO Story

I was 7 years old and after a normal school day, I noticed blurred vision in my left eye. As a very active and healthy child, this was unusual and so I went straight to my local opticians. Whilst there, I was told I had extreme inflammation in the back of my eye. They sent… Read More

Alyson’s NMO Story | All That Glitters Isn’t Gold

It began like a pain unlike any other. In 2009, and during my sophomore year of college, I was sitting in class when the shooting pain down my back began. It was as if someone took hot metal spikes and drug it slowly down my spine. Terrified, I never told anyone what I was going… Read More