Sumaira’s NMO Story

By Sumaira Ahmed

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 healthy 25-year-old woman living and working in Boston. At the time, I worked as the Director of Network Development at Boston Laser / Boston Eye Group, a multidisciplinary ophthalmology group best known in New England for restoring patients’ vision through LASIK and/or cataract surgery.

I spent a weekend in New Jersey celebrating the launch of my sister’s fashion line when I first noticed the black circle in my right eye. I brushed it off assuming it was a sunspot; summer had just started after all. I returned to the office Monday morning and noticed that the circle was not only still present, but had also increased in size and, pretty quickly, posed as an obstacle to getting work done. The office was relatively quiet because it was the week of July 4th and most of the doctors and staff were on vacation. I told the outgoing fellow that I was having trouble seeing and was hoping she could take a look. I had my first visual field test, and the doctor was simply startled when she saw the results; there was a significant visual field defect in my right eye. She showed one of the attending physicians who then ordered a full workup. Structurally speaking, there were no remarkable findings, but it was clear that I could not see. The attending physician called her neuro-ophthalmology friend for advice and an MRI was scheduled at Massachusetts Eye and Ear Infirmary (MEEI) for the following morning.

I went to MEEI the next day with my weekend bag assuming I’d be in and out and would be free to go to my friend’s house for the holiday weekend. Gosh, I was so naïve. Long story short, I was in the emergency room for 16 hours having seen five different specialists, who all scratched their heads puzzled by what was going on. It was one in the morning when I came out of my first-ever MRI in a completely dazed state when the neurology fellows informed me that inflammation on my optic nerves and chiasm had been detected on the scan and that I’d need to spend the weekend at Massachusetts General Hospital to receive a few doses of IV steroids. Truthfully, I was exhausted and disoriented from taking Ativan, so I agreed to everything in order to get some sleep. Three days later, I was diagnosed with idiopathic optic neuritis and discharged with a 16% chance of developing MS and expected full recovery within three months to one year. As instructed, I moved on with my life like nothing had happened. (Side note, I’ve always thought it was ironic that I got afflicted with a rare eye disease while working in ophthalmology – go figure!)

Three weeks later, I walked into a wall at my office. My skin was flushed, and I was nauseous. I felt a tingling sensation in my hands and feet. Something wasn’t right. The ophthalmic technicians reported that I had severe bilateral visual field defect and unable to read the large “E” on the Snellen chart (right eye was 20/600; left eye was 20/120). My boss told me to go to straight to the hospital as he feared it was only going to get worse. At the hospital, I was declared legally blind, got my first lumbar puncture (the worst!), had multiple brain and spine scans, and was discharged six days later. I was diagnosed with sero-negative neuromyelitis optica and began chemotherapy.  I left the hospital confused, terrified, and feeling isolated. How did this happen? Did I do something that triggered the onset? What was this disease? I had never heard of it and it didn’t seem like anyone around me had either. All I knew is that everything happens for a reason and I was determined to find out why.

After a month of bed rest and acclimating to my ever-changing new normal, I decided it was time to take matters into my own hands. In October 2014, I founded The Sumaira Foundation for NMO to raise awareness. The founding philosophy was that heightened awareness would ideally lead to increased funding for research and development, thereby getting us closer to a cure. I had no idea how to start, let alone run, a nonprofit organization but I was eager to get NMO on the map and have this community’s voice be heard. We are turning four years old this October and I’m really proud of how this organization has blossomed. Today, our team consists of 17 very talented individuals who volunteer their time, energy, and ideas towards illuminating the darkness of neuromyelitis optica. Our organization weaves light, color, and positivity into virtually everything we do which includes raising awareness, supporting research through our grants program, sharing stories through our “Voices of NMO” campaign, partnering with mission-aligned organizations to widen the reach of our impact, and creating a community for patients and their caregivers.

In terms of my health, while it’s not perfect, I’ve finally reached a point where I’ve rediscovered happiness, comfort, and peace. In four and a half years, I’ve had over 400 visual field tests, 100+ infusions comprising of 5 different chemo drugs, 14 MRIs/PET/CT scans, plasmapheresis, 13 visits to the emergency room, 13 specialists, 8 relapses, 6 inpatient hospital visits, 4 months of menopause, 4 eggs harvested, 3 surgical procedures in my bladder, 2 lumbar punctures, 1.5 years of Achilles Tendinitis/Plantar Fasciitis, one too many battles with insurance companies, and an injection in my right eye (OUCH!). That being said, I wouldn’t trade ANY of this! I am the woman I am today because of all my experiences and am truly living my best life. Through illness and the organization, I’ve met incredible and inspiring people who motivate me to keep pushing the envelope. My heart is so full and there is no greater honor than advocating for this community that deserves attention and representation.

Thank you, Transverse Myelitis Association, for sharing my story!

Sumaira Ahmed

sumaira@sumairafoundation.org

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Timing is of the Essence

By Andrea Mitchell

My name is Andrea Mitchell, and this is my MOG Antibody-Associated disease story. I am hoping to help other people going through this condition understand the importance of getting immediate treatment when having a relapse. I was 45 years old and I had a clostridium difficile infection and amebiasis after my husband and I returned from a trip to Cabo in Mexico. I had to take antibiotics for 3 months. I woke up on October 1st, 2011 and had a horrible migraine and pain and blurriness in my left eye. I saw an ophthalmologist the next day. He noticed that my optic nerve was swollen in my left eye and that was causing the blurriness. I could tell by his expression that something was wrong. He sent me to the emergency room where they admitted me into the hospital. The doctor came in and explained that after running a series of tests, that my MRI showed enhancements in my left optic nerve. I was given IV steroids and discharged. They gave me 4 days of liquid prednisone and a referral to a neurologist. The steroids didn’t work.

The neurologist was very concerned about what was going on. He did some more blood tests and a spinal tap. He also referred me to a neuro-ophthalmologist. The neuro-ophthalmologist did more blood tests, and everything came back normal including my spinal tap. It was not standard practice to do a MOG antibody test. I was his first patient with this disease and today he has eight patients. He first put me on 60 milligrams of prednisone. Within 2 weeks, I woke up completely blind in both eyes. I was so scared. We tried 1,000 grams of IV steroids for 3 days. I didn’t get any of my sight back. He then suggested plasma exchange (PLEX). I did get a good amount of sight back in my right eye. It was at 20/50. My left eye remained blind. Since my relapses were not under control, I lost the majority of sight in my right eye.

I was determined to find answers. Over the last 7 years, I have seen doctors at Kaiser, Stanford, Mayo and UCSF. The best suggestion that I received was from my doctor at UCSF to get the MOG antibody test in 2013. My doctor had to fight to get that test, but he was finally able to send my blood sample to Oxford. I finally got some answers. My test came back positive. Before getting the correct diagnosis, multiple times I had been misdiagnosed by the Mayo clinic as I was told that I had CRION, which is Chronic Relapsing Inflammatory Optic Neuritis. I was on 60 to 90 mgs of prednisone for 5 years straight and gained 100 lbs. I went into menopause the first year of taking steroids. It took two years for my diagnosis and that time might have cost me my sight. I was often hearing things like, “Let’s wait and see what happens.” Some doctors insisted that having MOG Antibody-Associated disease was not as devastating as Aquaporin-4 positive NMO, and that the recovery was much better. I beg to differ as I am legally blind. I had to be my own advocate and insist on seeing other doctors in order to find one that understands this condition.

This year I tried IVIG as a preventive medication but had to stop as I was getting very sick. I got horrible migraines, nausea and vomiting from it. I then switched to Methotrexate and have been stable for 6 months. I have also had no luck with Rituxan, Cellcept, or Imuran. Also, this last year I had 2 episodes of hearing loss. This was confirmed to be relapse-related by blood work and MRI of the inner ear canal. I often wonder if I might not be legally blind today if the MOG antibody test had existed or if doctors were aware of it back in 2011. I have attended a blind school and received a beautiful guide dog named Newcastle. All of this has helped me remain independent. I had to learn how to walk, cook, use adaptive technology, acquire daily living skills and use a computer. Being blind is not easy but you can adapt with the right training. I have a wonderful and supportive husband who has remained by my side from the beginning. We go to the Guthy-Jackson Charitable Foundation medical conferences every year in hopes of finding out new discoveries. I am now part of the MOG Project at the Transverse Myelitis Association. I joined the group so that I can help others with their MOG-Ab disease diagnosis. My hopes are to inform, educate, promote advocacy, support and provide awareness of all of the resources that are available. I also hope to provide some ideas on how to make The TMA website as patient-friendly as possible. I look forward to helping as many people as I can. The best advice that I can offer is to never stop searching for answers, even when you feel like it is going nowhere. Keep yourself up to speed on the information that is available. If you have optic neuritis, transverse myelitis, or any other related symptom, don’t be afraid to ask for the MOG Antibody test to be included with the other tests. It may save you from having severe disability. Remember that timing is of the essence.

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The MOG Project at The TMA

By Kristina Lefelar

In the Fall of 2013, my first year of college was finally beginning. I was loving life, embarking on new experiences, and finding my passions. I had always been a homebody growing up and my mom was my best friend – we always stayed connected. Things were going very well and I wasn’t worried about much going wrong at the time. One day in the Spring of 2014, I received a call from my parents. My dad told me that my mom had extreme pain in her eyes and was going blind.

My family was in a state of confusion and fear. As I continued my semester, my family kept me updated on the status of her vision. My parents were going to doctors trying to get to the bottom of it. When we met for lunch, we had to help escort her around because her vision was “blocked” by a large dark spot. When I moved out of my dorm room in May, she perceived the evening daylight as darkness, thinking it was nighttime. I never would have guessed that this was what I would be coming home to for summer break.

She was finally given a diagnosis – NMOSD (Neuromyelitis Optica Spectrum Disorder). NMOSD is a demyelinating disease that attacks the optic nerve and spinal cord. My mom was put on Rituxan and stayed on this treatment for four years. She was referred to Dr. Michael Levy for care, who is a world authority on NMOSD and heads research on this subject. He decided to treat her with Rituxan, but she had breakthrough attacks about once a year. Some attacks continued to further damage her eyesight, and some caused weakness, spasms in her legs, and loss of bladder control.

Recently, Dr. Levy finished developing an antibody test at Johns Hopkins for MOG. MOG antibody-associated disease presents itself similarly to NMOSD. The difference is the mechanism of the disease; NMOSD targets Aquaporin-4, while MOG antibody-associated disease targets myelin oligodendrocyte glycoprotein (MOG). My mom tested negative for the MOG test in the past, but with Dr. Levy’s new, more sensitive test, she tested positive. She had finally found her smoking gun. This new diagnosis was significant for the path of her treatment plan. Since Rituxan had not been working as well as expected, her medicine was then switched to CellCept.

Watching these series of events unfold has inspired us to take action on the lack of awareness for this rare auto-immune disease. The MOG Project is a campaign that we have launched under the umbrella of the TMA that advocates for a spectrum of rare neuro-immune disorders. The Project will stand up for MOG patients and help us obtain a better understanding of this illness. There are not adequate online resources for us to seek help and support, besides the MOG Facebook group. During the “non-attack” periods, many MOG patients do not look ill. My mom remained positive and continued to be the super-mom that she is – it is easy to forget what someone is going through when they have an “invisible” illness. This is why we need to provide an outlet for MOG patients – to show them that they are not alone in this fight.

Our story is important. Myself, Julia Lefelar, Cynthia Albright, Amy Ednie, Peter Fontanez, and Pamela Fontanez are teaming up with the TMA to tackle the missing pieces for the MOG community. As the founders of the MOG Project, we hope to provide MOG patients with everything that my mom did not have. We strive to influence the medical community to maintain a better understanding of this rare auto-immune disease, so that they can be prepared for future diagnoses. We hope to push for research funding that will aid in finding a cure through fundraising and donation efforts. We believe that it is our duty to educate new MOG patients on their disease, connect them with a supportive community, and raise awareness to our mission.

For more information on MOG Antibody-Associated Disease, please view the information sheet or listen to our Ask the Expert Podcast on this disease here.

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In Memory of Alex

Katie Bustamante’s son, Alex, was diagnosed with Acute Flaccid Myelitis at the age of five. Tragically, he passed away from complications of this disorder. In loving memory of Alex, Katie started a giving fund which raised over $8,000 in support of research of rare neuro-immune disorders. Our thoughts and condolences are with Katie and her family as they mourn the loss of their loved one.

By Katie Bustamante

On May 20, 2018 we lost our beloved Alex.  Alex was a sweet and loving six-year-old boy that enjoyed life to the fullest.  He was a firecracker with incredible strength.

For the last year and a half, Alex had been fighting a rare condition known as AFM.  The illness attacked his spinal cord on December 24, 2016.  Within a week, he had become dependent on a ventilator for breathing, and his heart had been severely weakened from the stress of the condition.  He also suffered from upper body paralysis.  Despite these devastating physical challenges, Alex never lost his spiritual strength.

He loved to sing and found joy and beauty everywhere.  He loved baking, insisting that every cupcake or cookie had to have sprinkles.  In a lovely paradox, he also adored the garbage trucks, particularly recycling.   He always wanted to own his own bakery and be a garbage man, agreeing that he should do the baking before the garbage pick-up due to hygienic reasons.  He enjoyed reciting the names of those he loved on a regular basis.  The list was endless and he was always genuinely thankful for the people in his life.  Alex adored animals from the day he was born and always named Friday (the dog), Annie (the cat) and the numerous fish we managed to acquire when he listed his loved ones.  He loved dancing and snuggling.  He loved dressing up and playing pretend.  He appreciated every positive thing that the world had to offer.

The loss that our family and friends have endured is indescribably painful.  Alex was a champion of strength and an amazingly fun person to be with.  The world is not the same without him, but we hope that he now has the freedom to embrace his dreams and become everything that he was meant to be.  We miss you Alex –  Our snuggle bunny, our fighter, our friend, our singer, our boss and everything we needed in this world.  We love you Alex!  Always and forever.

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My TM Journey

By Claire Field

It was a sunny day. I remember the early morning sunshine pouring in through the living room window shaming me into hooving up all the dust. Typically, the hoover bag needed changing first, so while squinting because of the sunlight I bent down to take out the bag.

That was when it hit. A sharp, stabbing pain in my lower back. It crippled me, leaving me a writhing mess on the floor. I don’t even remember getting into bed, but I do recall screaming that I didn’t want to go to the hospital. I absolutely hated hospitals, even when I knew I needed it I refused to go, and I was still cogent enough to assert my free will. So instead my partner brought over the counter pain meds and I curled up in bed for two weeks.

Though the pain faded a little, other odd things happened. Over the weeks, my legs started feeling numb with tingling sensations running up and down them. I went to the GP, thinking I had a trapped nerve, but he referred me for an MRI instead. It was then that I was first prescribed tramadol for the pain and that eased it a little, yet more and more my legs became numb. Before the end of the year, I was taking gabapentin, both drugs aiding in alleviating my symptoms, yet I still needed to increase the doses of each.

The first MRI showed a little damage in the lower back, but also evidence of damage further up. The GP told me the neurologists wanted pictures of my mid-back, so I went for the second MRI.

“They think something far more serious is going on further up the spine, perhaps in the brain stem, so they want a third MRI, this time of the head and neck,” my GP told me. He also mentioned that they thought it might be MS. That was when it first hit me that this was something truly serious, something I might not recover from. I felt like a deer caught in headlights.

With the MRI, it turned out to be third time unlucky, as they found a lesion in the C4-C6 region of my spine. I was then sent to a neurologist who explained my condition – Clinically Isolated Syndrome. This was what I believed my diagnosis to be, with a risk of developing more lesions in the brain – resulting in MS. The neurologists were undecided on whether or not I was presenting with MS – my oligoclonal bands showed evidence of disease and were positive for inflammation – but I still had no brain lesions, and no other lesions except for the first one. In the end (almost a year after I had my first neurological “event”) I was told I had something called Transverse Myelitis and that my symptoms might improve but it was unlikely.

During the series of MRI’s, between the first and the second, I lost the ability to walk. My legs were too numb and too weak. Since then I’ve had to use a wheelchair and crutches. Fortunately, being in the UK, I got these things for free, though after a bit of a wait.

The symptoms fluctuated, but over time they plateaued, and I was getting by on my drugs and physio. Other secondary symptoms developed – the tendons and ligaments in my wrists became severely damaged due to crutch and wheelchair use, my bladder was retaining urine, I was finding it hard to swallow, I developed Trigeminal Neuralgia, and the pain all over my body was becoming unmanageable – yet I tried to move on with my life, accepting that this was the state of play. I would not get better and would only truly get worse if I developed more lesions because of MS. With this in mind I applied for a Master’s program in Health Psychology.

It was the first time being back amongst “normal” people for four years. I’d only really seen the inside of patient transport and various hospitals between 2012 and 2016. It was the first time doing academics since I’d fallen sick (I had my first episode just after graduating with my first degree). It was scary, thrilling and daunting, but I was finally back on track with my career goals. This was supposed to be a test of my mettle, to see what my body could handle and if I could do something full time. I’m not sure if I passed this test, if I am honest, I think I both failed and passed. I managed to graduate, but I also had a relapse.

It was when I was in the middle of my course between the first and second semester when I relapsed. Again, MS was being touted. I ended up in Professor’s Young’s clinic at the Walton Centre in Merseyside (the second biggest centre for neurology in the UK and one of the best in the Europe!). Again my MRI was clear, but it was also definitely a relapse. Again they were unsure of whether it was MS or TM, but it was obvious that I did not need disease modifying drugs. We’d been trying to conceive so they steered clear of adding drugs they were not sure I needed, keeping me with a TM diagnosis. I was relieved – I’d become used to TM and all its foibles and I felt I could handle a TM relapse. With help that is exactly what I did.

The second semester of my course was chaos, but I found out long ago that I tend to thrive in chaos! I had deferred exams because of the relapse, as well as some other coursework assignments, so I ended up doing semester one work alongside attending lectures and doing the work for semester two! I not only passed everything, but I did so with style in some important areas.

What I think is the most important development I am taking away from my Master’s is the subject of my research. I was inspired by the research the university had done and was doing on pain, particularly the research on gabapentin and other drugs for Fibromyalgia. It spoke to me, and so I decided to focus my research on TM pain. This has led to me co-authoring a paper based on this research as well as putting together a proposal for further research.

In 2017 I graduated my M.S.c in Health Psychology and I did so while doing rehab physio and other treatments for TM. I am currently hunting for funding for my Ph.D. which will focus on researching pain interventions for TM and MS pain.

Transverse Myelitis changed me in fundamental ways, but also for the better in the most important aspects. I’m stronger because of it, more confident about what I can and cannot do and more able to call it a day when I reach my limits (or run out of “spoons”!). I can ask for help, and though sometimes I feel guilty or frustrated for needing help I try not to let that affect me negatively. I certainly have less patience for silly people and stressful environments and I listen to my body more and make more sensible decisions – this includes eating healthier and obeying everything a health professional says!

We are still trying to conceive, still hoping, and I am still pursuing my career goals. In fact, having TM has given me a unique perspective and I am heading into pioneer territory with my investigations. Even if my pain increases I hope to reduce that of others.

That is my journey and I hope I have many more miles to go before it is all over.

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Rare but not Defeated – My MOG Story

By Cynthia Albright

My name is Cynthia Albright, and at the age of 45 I was living what I thought was one of the most joyous times of my life. My husband and I were going to be celebrating our 22nd wedding anniversary, both of my children had already graduated from college, and I was expecting my first grandchild. Then, my life as I knew it quickly came to a screeching halt.

In November 2012, I was standing in my kitchen preparing dinner, when out of nowhere, I experienced the most painful, super sharp glitch of pain in my left eye. It was as if somebody had snapped my eye with a rubber band. The pain ran from the base of my skull to the back of my left eye. I literally stood there completely in shock.  At that point in time, I thought this episode was just going to be a topic of conversation at the dinner table. Boy, was I wrong.

About five days later, the eye pain started. Every time I moved my eyes from side to side, glitches of pain and light appeared. I decided to go to the emergency room, knowing there was something terribly wrong. They examined me but didn’t find anything wrong with my eye. After seeing several more specialists, I was referred to Dr. Shalom Kelman. He is a neuro-ophthalmologist. He examined me and diagnosed me with Optic Neuritis. I had three more Optic Neuritis flares within a year’s time. The last Optic Neuritis flare was just five days prior to my first visit with a multiple sclerosis (MS) specialist, which very well could have made a bad situation into a worse situation. Some of the preventative treatments for MS can actually make Neuromyelitis Optica (NMO) worse. Who knows how well I would be functioning right now if I had been treated with the wrong drugs. I woke up blind in my right eye, I had terrible back pain, and I hadn’t walked straight for two days prior. I saw Dr. Shalom Kelman, and based on all of my neurological symptoms, he suspected that I had NMO, and not MS. He immediately had me hospitalized, and IV Solu-Medrol was given to me. On the second day of my hospital stay, my vision had been mostly restored. I was then referred to Dr. Michael Levy. He is an Associate Professor of Neurology at Johns Hopkins and also one of the top NMO specialists worldwide. Dr. Levy was able to give me the diagnosis of NMO based on diagnostic criteria, even though I tested negative for the NMO antibody, which is not unheard of. I was immediately started on a preventative treatment. It is called Rituxan. I currently receive four Rituxan IV treatments every year.

In February 2018, I was tested for another antibody called Myelin Oligodendrocyte Glycoprotein (MOG). The blood test results for this disorder came back positive. So, my diagnosis was changed from NMO to MOG Antibody-Associated Disease. Since my Rituxan treatment has kept me stable, with zero flares, there was no need to change my treatment.

A great friend of mine, her daughter, her sister, and myself have started what we call the MOG project. Our mission is to represent MOG patients, their families, and caretakers that are seeking resources to help deal with the ins and outs of this very rare disease. I am proud to be a volunteer for the TMA, and I am grateful that they were able to take us under their wings. I am eager to learn more about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), MOG Antibody-Associated Disease (MOG-ab disease), and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM), so I can pay it forward by helping to spread awareness and raising funds for research with the ultimate goal of finding a cure, as, for many, it is a race against time.

For more information on MOG antibody-associated disease, please listen to our recent Ask the Expert podcast here: https://tma.ong/MOG-podcast.

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Finally Diagnosed: A New MOG Test Reveals the Truth

By Julia Lefelar

You don’t always know where the road you are traveling in life is taking you, but once you get to a certain point in your journey, you can always look back. Sometimes signs you missed were there, but they were written in a cryptic way. It is only after that second look, in retrospect, that we can understand what they were trying to tell us. This is the story of my MOG journey. I feel it is important to tell, because unlike many who suddenly had a changed life, mine changed slowly and the signs were there all along.

I am not sure exactly when this started, but my first memory of something being off was that I became extremely tired. Not the normal kind of tired, but the kind that scares you, like you will just stop breathing if you don’t try. I also had pain around my eyes. My doctor did some tests, with no results. After months of pressing the doctor, I was finally told that I had “Chronic Fatigue”. I spent the next two years searching for answers. I prayed a lot.

One day, while in our kitchen, I asked my husband if the lights seemed dim. He did not think so. I called my doctor, who by now was frustrated and referred me to a psychiatrist thinking I was depressed. Willing to try anything, I met with the psychiatrist who determined I was not depressed. If anything, I was a little “spun up” that I possibly had a chronic illness and my doctor was not taking me seriously. He recommended getting a new doctor.

A few years later, I had one more incident of dimming vision, which went away like the first one. Over time, the tiredness faded.

Then in April of 2014, after another cold, I started having eye pain, especially when rolling them around. My doctor gave me antibiotics, but a few days later, it was still so painful and my vision in both eyes started to dim. This time it was much worse, darkening by the hour. Panicked, I ran to the eye doctor who saw me immediately and told me I was having a bout of Optic Neuritis (ON). He sent me to Shalom Kelman, an ophthalmologist who quickly administered Solumedrol, and I was better.

Unfortunately, this did not last. Two days after stopping the medicine, I was blind again and treated. Again and again it happened, ending with a week in the hospital. Luckily, Dr. Kelman referred me to Dr. Michael Levy at Johns Hopkins. He is the world authority on what I learned could be Neuromyelitis Optica (NMO). Dr. Levy took my case and by August, he put my symptoms to rest with Rituxan. A blood test for NMO was negative. After repeating this more than once, he said that I was in the group of those who they considered as having NMO but tested negative for it. This happens in about 30% of patients. In other words, I was in the Spectrum Disorder of NMO, or NMOSD. It was all very confusing, and I tried to be brave.

Despite the Rituxan, I still suffered attacks about once a year, either in one eye or the other, and once with a small lesion on my spinal cord. This caused progressive weakness and uncontrollable spasms in my legs as well as loss of bladder control. All without much damage though. Finally, after my last attack, Dr. Levy decided that maybe it was time to check me for the MOG antibody, and it was in fact positive. After seventeen years in the making, I finally had my “smoking gun”.

I am lucky, as others are left with bigger scars from this disease. I have to deal with the occasional pain in between my shoulders and while I can see, I have visual issues. Color is dimmer, I need more light, and I can’t pick things out as quickly in a complicated arrangement of objects. Shopping is not what it used to be and looking for things in a messy drawer sometimes frustrates me. I have had my tears, but I had to find the silver lining.

Despite this, still every day is a little scary when your body is a loose cannon. People with colds scare me as I try to be careful not to get sick. Medicine choices are few and Dr. Levy has changed my preventive treatment to Cellcept, hoping for better control over the attacks. Preventive options for MOG are few, so time is of the essence to find a cure.

Because of these struggles, my daughter and I decided to start the MOG Project. My good friend, also a newly diagnosed MOG patient, as well as my sister, happily made the commitment to join us to support the community of those who have nowhere to go and are frightened at the prospect of having a rare disease with no cure. The TMA has graciously taken us in and allowed us to help launch their newest disease advocacy. Things are looking up and for once, the road ahead seems hopeful.

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My Transverse Myelitis Journey

By Anonymous

It all started during 2014-2015 Christmas break in my 6th grade year.

On Christmas Eve, my family and I were exchanging gifts. This year, the power was out and it was pretty cold in our house, and my feet felt numb. My mom dismissed it as my feet being cold and told me to go put on another pair of socks. I followed what she said and continued with all the gifts and activities.

The next day, my feet and bottom felt numb. I didn’t think much of it, I thought it must’ve been the cold and how I slept. I also had flu-like symptoms, so my mom got some Tamiflu for me to take so I would hopefully get better.

The night of December 25th was sleepless. I had extreme pain in my lower back and hips. My mom gave me some pain medicine, which failed to work, and stayed with me through the night. The next morning, I woke up and could barely feel my legs. I attempted to get up but failed and ended up sitting on the floor.

11-year-old me didn’t sense the severity of this situation. I texted my mom “I’ve fallen and I can’t get up.” She thought I was joking, until she came and saw that I really couldn’t get up. I was helped to the couch. Then, my mom had to leave for work at the hospital, but her boyfriend at the time (her eventual husband and my legal father), Jim, was a general surgery resident. I didn’t know at the time, but he is the reason I’m nearly completely recovered today.

December 26th made everyone realize something was wrong. Jim asked me, “What do you mean when you say you can’t walk?” I told him, “When I try to walk, my legs don’t work.” Today, he tells me that at first he thought I was faking to get attention. So, he asked me to try to walk. He described my walk as a “slap-step,” which he knew I would not know how to fake, and my legs collapsed underneath me and I fell.

My mom called my aunt, a Registered Practical Nurse (RPN), to come and look at me to get a second opinion. She knew something was wrong also. During my aunt’s visit, I tried to use the restroom by myself, but when I got there and shut the door, my legs gave out and so did my bladder. The only strength I had was in my arms, so I dragged myself up and yelled for my aunt for clothes. This was only the first embarrassing memory.

That evening, we packed clothes and went to the children’s emergency room at the hospital Jim worked at. It was an hour drive and when we got there, I had to be carried inside because I couldn’t walk at all. We were in the waiting room for a long time.

When I finally got checked in, they asked me a number of questions I had already been asked by my mom, Jim, and my aunt. The first test they did was a bladder scan. My bladder was three times as full as it was supposed to be. I tried and tried to void but it wasn’t happening. I had to get a catheter. This was the worst thing I had ever experienced at that point in my life, and it was only the start.

Now, my hands and forearms were beginning to become numb also. Thanks to Jim, he made me get an MRI. This MRI lasted nearly three hours, and towards the end I was in a lot of pain, but I was unable to press the button because it was in my weakest hand. After that was finally done, the chief of pediatric neurology came to see me in the middle of the night.

Throughout this whole ordeal, I stayed completely calm, thinking, “I’ll be fine, Jim will get them to fix me, I’ll go back to school next week.” But my mom and Jim were a nervous wreck. Jim knew that if the chief of pediatric neurology comes in at an undesirable hour of the night, there’s a serious problem.

I don’t know how I was so lucky, but this neurologist had just completed a full study on transverse myelitis. He knew exactly what to do.

I had to get a spinal tap next, which would’ve hurt but I was becoming more and more paralyzed, so I didn’t feel much. I was in the ICU for the majority of the time after this. My doctor decided to treat me with a liter of steroids every 12 hours. This was painful. It made my IV vein stiff for the next few months.

My parents didn’t tell me for a while that the neurologist had originally told them I would never walk again. According to them, my mom was in complete shock and couldn’t comprehend anything the doctor was saying; she couldn’t make out what he was trying to tell her.

Through my whole hospital stay, a therapist was assigned to come talk to me. Every day. I hated him so much. All he was doing was trying to help, but I didn’t want to talk to anyone. Also, I couldn’t shower on my own. My mom had to help me, and it was awful. It feels terrible to not be able to take care of yourself. Every day I told myself, it will get worse before it gets better.

For three days, I made no improvement. Each day, I was urged, but I’ll call it forced, to sit up. It was extremely painful because I had a shingles-like pain all over what wasn’t paralyzed. I didn’t want to move at all, and the majority of the time, I didn’t. I had to have a CO2 monitor for a day or two and it made me look very sickly, and that made my mom even more stressed.

My doctor was planning for plasmapheresis the next day since I wasn’t getting any better. But on the fourth day, I could move my toe. By the end of that day, I could move my foot. The next day, I was able to use a walker to get mobile. It was an amazing improvement. That day, they also took my catheter out.

On day 5, my step brother brought my dog to the hospital. I was able to be wheeled outside, and I got to hold her. This made me extremely happy. My doctor told stories of the “dog church” that he went to. He had them all praying for me.

I was walking very well by the 6th day with the walker, but I hadn’t voided since they took my catheter out. So now, it was time for a new one. It was equally terrible as the first time. But hey, I could walk.

By the seventh day, I could walk on my own. It was time to go home. I was sent home with a walker, but I never had to use it. I was very disappointed that I was not going to get to go to school the next day. I didn’t want to be different from anyone at school.

When I was sent home, I had to use catheters to void since I couldn’t myself. This only lasted until I was able to get into a schedule.

I spent six weeks being home-bound and I did my best at keeping up with all my school work. I was extremely weak, and it really discouraged me since I was a cheerleader, and before everything happened, I was very strong and could do all kinds of flips. I went to physical therapy for two months and built some strength back, and during that time, I tried to do simple gymnastics. During my time at home, I was asked so many questions from my classmates. I hated being different.

When it was time to go back to school, I was very excited. But when I went back, there were even more questions. I also had a bladder schedule which I didn’t like since all I wanted was to be normal again. Around this time was when I started having accidents. My pelvic floor was extremely weak. These accidents are humiliating, and they still haven’t stopped today.

I continued with therapy and school as time went on. At my last visit with the neurologist on March 23, 2015, I was tested for neuromyelitis optica. The test was negative. On this doctor’s visit, I showed my neurologist how well I was by doing a back-walkover in the hallway. He was very proud.

Things continued about the same with my life for months. We went on a trip to San Antonio and during this trip my mom realized what a problem I had with my bladder. I had to pee every five minutes and had multiple accidents.

After returning home, I was referred to a pelvic floor therapist. I worked and worked with her for the school year and reached a point where I was pretty well off, so I tried to continue on my own through the summer. I wasn’t being held accountable by my therapist, so I slacked off. When it was time for the next school year, I had several accidents and started therapy again. Then, I quit the next summer. The next time I started back at therapy was right before the next school year. This worked well for me, though with the anxiety of school starting, I still had accidents. I have to pay very close attention to my body and not ignore anything it tells me. This way, I have less and less accidents.

Now, it’s my freshman year of high school, and I had been going to therapy until recently. I might not have to go ever again if I can keep up with everything on my own. I just recently had a surgery for my overactive bladder: a cystoscopy with Botox. I think this will work well for me, and I won’t have to take medication for it anymore. I just have to get it redone every 6-9 months.

I think my transverse myelitis was caused by a flu shot. I am choosing not to get a flu shot again because I worry about relapsing. Any numbness or odd sensation worries me that I might be having a relapse. I hope I will be lucky enough to not have a relapse, but nothing is guaranteed.

I am doing great now! I am on my school’s track team, I’m doing well in school, and I’m very hopeful that I will reach any goal I come across.

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Transverse Myelitis: the inside story

By Glenn Hartz

“It’s an autoimmune storm. Came and went and left its damage at C1. All gone now – except the scar. Might come back. Don’t know . . .”

Every time I got sick in the past I could eventually return to my familiar life.

This was different. I limp. My right arm is palsied and slow.

The inside story of my journey through loss and on to hope is captured in this 6-minute video, Loss and Hope. Inspired by Christopher Reeve’s 1995 60 Minutes interview, it begins in a barren attic of limitations and ends with a lush sunrise of new possibilities.

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A Light in the Darkness

By Tara Duffy

Musical notes sounded in my mind like faint memories, bringing me back to a time when misery was not a close friend. I closed my eyes as a stormy breeze swept over my entire body, leaving small bumps on my skin. I had not felt that sensation in so long, that feeling of being alive and free; I breathed it in, let it fill my soul. I hadn’t been outside in two weeks. I watched as people walked by, completely unaware of the great blessings they had this day, blessings they probably never even thought about. It started to rain and that’s when I heard my dad’s voice next to me. “Ready to go inside?” he said, knowing in his heart I really didn’t want to. I nodded and forced a smile. I felt the wheelchair begin to move beneath me across the gravel, and then we reentered through the front entrance of Boston Children’s Hospital. I couldn’t help but notice the people staring at me as I was pushed along, but I ignored them. That’s when I saw her. She was most likely 6 years old, a bandage around her head, but you could still make out her pale hair. As I was passing, my eyes met hers, so innocent and beautiful. The words that left her lips in that moment changed me forever. “Mommy look, she’s in a wheelchair too.” The eyes of my soul were instantaneously broken wide open. At hearing those words, I was happy to be in that wheelchair. My understanding of reality and what it really means to live became clear. Real life is being in the wheelchair where you are truly part of the suffering of humanity, but it is also the joy that can be found by connecting with others who are also living in sorrow and torment. I realized in this moment all I wanted to do was take away the suffering of that little girl and every other child in that hospital.

My journey from darkness to light began October 7th, 2017. It was a Tuesday morning when I blacked out in my kitchen and went to the ER at St. Joseph’s Hospital for the first time. A week later, I had only gotten continuously worse every day at home, but I ignored the signs that something was wrong because everyone was telling me I had to get better. That following Tuesday I was taken to the ER again, but this time I was sent to Boston Children’s Hospital. My body was completely numb from my chest down and I couldn’t walk. I remember that day clearly because of the nightmare it presents in my subconscious. I had been there for only a few hours when I went to the bathroom, sat down to go and could not rise back to my feet; I fell to my knees, tears streaming involuntarily down my face. I could not move, I had no control anymore, I was helpless. The sense of fear that gripped me then was the most powerful I’ve ever felt before.

I remained at Boston Children’s for two weeks, being moved from the neurology unit to the Intensive Care Unit, and back to the neurology unit where they surgically implanted a central line in my neck for a process they call plasmapheresis. The neurology team led by Doctor Gorman informed me they may never find out the cause of this disease they call acute transverse myelitis, an inflammation of the gray and white matter of the spinal cord. This time of trial has taught me many things: determination, that it’s okay to be angry and sad for a time, but that there is an inner strength and happiness inside you if you just believe it enough, and most importantly that the real meaning in life is forgetting about your own suffering and giving yourself to others.

My name is Tara Duffy. It is now February of 2018, and I am still suffering from the constant and fluctuating spinal pain and my spastic bladder, as well as cathing. I am in my third week of school after being out for almost 4 months, most of my senior year of high school gone in the blink of an eye. I feel alone, distant, unable to connect with any of my previous friends or classmates. My old life was stolen right from under me and living with my new life has challenged me and forced me to grow in ways I never wished to imagine. But in of all of this, a newfound compassion for those who suffer, and a dream to one day become a neurologist myself at Boston Children’s Hospital has arisen in my heart and soul. I hope one day I’ll be able to save the lives of children and be there for them just like my doctors and nurses are here for me.

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