The End of the World as I Knew It (and I feel fine)

By Sue Lamoree

On my fortieth birthday, I was diagnosed with Transverse Myelitis (TM). The life I knew ended that day and a new life began.

The following is an excerpt taken from the first entry of my journal chronicling my experiences with TM over the past twenty-four years. I hope my story encourages people to have courage and faith as they read my humorous, spiritual and sometimes challenging anecdotes about life from a quadriplegic’s perspective.

Unlike most people, my symptoms manifested over a period of months. I noticed I wasn’t able to walk short distances without requiring frequent rest intervals. My immediate reaction was to exercise. I spent weeks walking around my neighborhood and running in place in my 550 sq. ft. apartment, without any noticeable improvements.

Next, I noticed the occasional leg jump and that I was unintentionally walking into plants and walls. I knew something wasn’t right, but I was terrified and surprisingly embarrassed. Eventually, I visited my primary care physician who referred me to a neurologist. Now I know why doctor’s offices are always equipped with boxes of Kleenex. The neurology specialty was probably the LAST area I wanted to consider. And yet it was an underlying fear that haunted me from the onset of my symptoms.

The first order of business was to undergo an MRI of my brain and spinal cord, which confirmed I had a lesion on the C5 level of my spinal cord. Good news—it wasn’t on my brain, which could result in blindness, breathing difficulties and speech impairment among other things. Bad news—the lesion was on my cervical spine which meant my entire body was affected by the damage it was causing to my central nervous system.

Apparently, I was already experiencing a degree of paralysis. My next concern—will it get worse? Neurology is a such an inexact science, so it wasn’t surprising when the doctor was unable to give me a concrete answer. It was, however, devastating. I was completely unfamiliar with the resources available to victims of spinal cord injuries, so I literally imagined myself confined to a bed for the rest of my life. Fortunately, those images quickly faded as I tried to face the reality of my circumstances.

While dealing with the stress of waiting for results from tests and steroid treatments, I continued my routine by pushing this strange, uncooperative body to work each day. With increasingly unsteady steps, I battled the hustle and bustle of downtown Seattle. I dealt with physical obstacles of stairs, uneven walking surfaces, heavy doors and small bathrooms, all new challenges to my once “normal” life.

Without my consent, I was forced to take my life in a new direction. In an instant, the minor concerns that plague us all were no longer relevant. How was I to cope with the everyday requirements of living, while dealing with the unknown future of my health? Fear overwhelmed me as I tried to imagine the life that was unfolding before me.

Please visit my website keeprollingon.co for more of my story – “How to Train Your Demons, finding joy while living with a disability.”

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Brayden’s Journey

By Natalie Arabie

Brayden, a very athletic 12-year-old boy, was diagnosed with Transverse Myelitis from the T-5 through T-7 level on February 1, 2018. His symptom onset began the evening of January 31, 2018. He felt like his foot was sleeping as he began baseball practice. He started jumping and running, trying to wake it up. When he bent down for a baseball, the feeling traveled up his leg to his waist, and down the other leg, causing his legs to collapse on the field.

Once at the emergency room (ER), Brayden was misdiagnosed by the ER doctor and was ready to be released. His father and I insisted that it was much more, and that he be admitted for further observation. The following morning, a neurologist made contact with me discussing his symptoms and the status of his diagnosis. Basically, the neurologist diagnosed him by phone with TM. That’s where the MRI and spinal tap came in and discussion of treatment and transport to another hospital.

After 5 days of steroid treatment in Lafayette, Louisiana, Brayden was moved to Texas Children’s Hospital (TCH) in Houston to further his treatment and look at other treatment options since there had been no change in his status. TCH decided on continuing the IV steroid treatment along with intense physical therapy and occupational therapy.

After a little over a week, Brayden, one determined young man, was released to go home with continued medications and therapy. After just three months, he was released to go back to school and sports. With some weakness in the ankles and knees, he refused to let it overcome him. He still has times of back pain and bad headaches but always pushes through and keeps a smile. The support of his friends, family, coaches and community has been a big part of his healing.

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My Journey with TM

By Jessica Gilmore

It was early in the morning of October 7th of 2007 when I was awakened by severe pain shooting down my right arm. As I tried to stand, thinking it was simply a nerve irritated by the way I had been sleeping, a sensation washed through my entire body from the shoulders down and I could no longer support my own weight. A very defined band circumscribed a line around my shoulders, directly over the center of my sternum. Above that line, pure normalcy. Below that line, zero appropriate sensation accompanied by severe, electric-shock type reaction to touch. I could no longer lift my arms, could not sit up on my own, and had no ability to contract a single muscle below my shoulders. I was convinced that I was experiencing a side effect of a very low dose muscle relaxant (occupational hazard of being a pharmacist!) and asked my husband to drive me to our community ER at the hospital where I worked. This ride was the single most painful experience of my life, including childbirth. A short helicopter ride to the university hospital an hour away, and I began to understand something was very seriously wrong. In the ER, the debate between a neurology versus orthopedic admission began after results of the four-hour MRI showed swelling of the spinal cord between the C6 and T2 vertebrae. Finally, neurology won out and I was transferred to the medical Intensive Care Unit (ICU) under the care of the neurology team. IV steroids were started along with precautionary antibiotics and antivirals (to rule out meningitis). Slowly, after a few hours then days, my arms began to cooperate again, and I began to regain some feeling in my hands. My legs were still like lead and my skin screamed at any touch or temperature extremes.

I cried three times during my ordeal, the first being in ICU. Anxious for answers, I asked a nurse if there had been any word of a conclusive diagnosis to which the nurse very clinically replied, “Oh it could be anything. They’re considering Lou Gehrig’s disease, among other things”. The possibility of developing a progressive musculoskeletal disease at age 26 was terrifying. After a few days, I was transferred to the regular neurology floor for further testing though all things seemed to point to transverse myelitis. Large academic groups came from several specialties and stages in education to study my case. At times some learners and teachers (mostly physicians) would forget there was a person connected to this disease and insist on demonstrating my painful reaction to touch for their groups. I could only support academia so much before I had to end the lessons permanently. It was here in the neurology unit that, after not seeing my 16-month-old daughter for days, my family was able to bring her in. She climbed up in my hospital bed, smiled her tiny face up at me, and laid her head on my chest. This was the second time I cried.

After 10 total days as a hospital inpatient, I was transferred to an inpatient rehabilitation facility. This was one of the most awful and degrading experiences. I didn’t have the ability to defend myself or run from harm, should it arise (e.g., fire or, God forbid, assault), which caused me great anxiety and panic. I begged anyone in my family to stay with me through the nights.

I began to relearn the muscle movement for walking again in a huge Transformer-looking machine called an auto-ambulator. After two weeks as an inpatient and several more as an outpatient with this facility, I started physical therapy back at my community hospital where I felt the most at home. After three months, I regained enough mobility to walk with the minimal assistance of a cane and was able to return to work.

My total progress since that year has been about 90%. I have significant sensory deficits in my hands, legs, and feet and still cannot feel the activation of a few major muscle groups. I can walk and even run a little but with a gait disturbance that tends to be more predominant in extreme cold. I worked with a personal trainer for regaining strength and took up yoga for balance in the first years following the illness. Both of these things I cannot recommend enough. I have found some of the biggest rewards, however, in Brazilian jiujitsu (Uha, Gracie Barra!!). TM left me lacking speed, balance, muscle mass, and coordination, and this grappling-based sport has helped me feel safer when I am out on my own or with my children (who also train). Best of all, jiujitsu is almost entirely ground-based so falling down is actually part of it! I humbly and gratefully received my blue belt in May of 2018, the biggest physical accomplishment I’d made in 10 years.

I’ve left out many of the painful details of this story, including the third time I cried, in the name of brevity. I am happy to share if anyone would like to hear it individually. In closing, I will share my most heartfelt thought from this experience: I never once asked “why me”. Because if not me, who then? My daughter? My husband? My mom or dad? No way. I was and still am happy to carry the burden if, somehow, it meant that someone else I loved did not. Additionally, my determination and resolve for challenges has grown indomitable and I chose to thank my TM for giving me a more grateful perspective of life.

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Ashlee’s NMO Story: A Fighter for her Family

By Ashlee Olsen

My name is Ashlee. Thank you for taking the time to read my story.

In 2004, about six weeks after giving birth to my son, I developed my first symptom. One morning, I woke up and couldn’t see out of my right eye. I visited all the local emergency rooms trying to figure out what was wrong. I was constantly told by all the ER doctors that I was a 21-year-old looking for attention. Fast forward one year later – it happened again but this time in the left eye. I ended up going to an ophthalmologist who informed me that I was probably going to be diagnosed with Multiple Sclerosis within the next ten years.

In November of 2005, I woke up completely blind! I begged and pleaded with my ophthalmologist to get a steroid treatment but unfortunately, he chose not to do that because he felt the treatment wouldn’t work. In a desperate attempt to salvage my vision, I ended up finding a doctor who would give me a steroid treatment, but at that point, it was too late. Additionally, in December 2005, my mother became very sick. In order to be by her bedside, I put my health on hold. Sadly, I lost her the following month.

I decided to visit the University of Florida Health Shands Hospital. Here, I saw an ophthalmologist who was 99% sure I had Neuromyelitis Optica. He immediately admitted me so I could undergo intravenous immunoglobulin (IVIG) but as my luck would have it, it was once again, too late. I will never forget the day my doctor sat down on my bed and told me that I had tested positive for NMO. I vividly remember looking at him, pleading, saying, “I’m too young to die.”

Soon after, I started a drug called Imuran. Even while on the new drug, I relapsed. This relapse was different. During this relapse, I couldn’t feel my right leg. It moved, but I didn’t feel it. I was rushed to the hospital where I underwent a procedure called plasmapheresis, also known as plasma exchange (PLEX).

In December 2008, on top of dealing with the stressful nature of my debilitating disease, I decided to leave my son’s father; he was becoming verbally abusive and I could no longer bear it. I won’t lie, I was considerably stressed wondering how I would make it in life while being legally blind and caring for a 4-year-old child all on my own, but I’m a survivor and I was determined to make it.

Here comes the good news – I finally met the love of my life in 2009. In November 2011, I stopped my medication and attempted to have another child. I was nervous, but it was worth it. In October 2012, we were blessed with a beautiful baby girl and in May of 2014, my husband and I exchanged vows.

NMO has changed my life in so many ways; I’ve overcome some very difficult, unforeseeable obstacles. Even though I’ve lost my eyesight, which so many take for granted, I’ve never allowed this disease to hold me back. Despite all my struggles, I feel truly blessed with my two beautiful, healthy children and doting husband. I’m also happy to share that, in spite of losing a significant amount of vision, I’ve started my own photography business. Photography is one of my greatest passions and I’m so grateful that I am able to do what I love. Lastly, it is with great joy that I announce I have been relapse-free for 10 years! Let’s work together, find a cure, and help illuminate the darkness of Neuromyelitis Optica!

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A Story of ADEM and a New Illness: MOG Antibody-Associated Disease

By Peter Fontanez

In February 2014, at 5 years old, my daughter Isabel was a beautiful, bubbly girl with no health problems. I took her to a Father-Daughter Dance, and she became ill two days later. This was the start of what would amount to three hospital visits and five doctor visits with multiple misdiagnoses. One week after the Father-Daughter Dance, Isabel was admitted for what would turn out to be a misdiagnosed disease. At first, she was having high fever with active vomiting, extreme behavioral changes and her doctors did not know what was going on. They continued to treat her for unrelated illnesses. Even while in the hospital, the doctors there attempted to discharge her, stating that it was only an infection and that she was fine. We told the doctors that it was something neurological and that she was in an altered mental state. They insisted that she was not in an altered mental state and that we did not know what that was. By the next day, she was in the Pediatric Intensive Care Unit (ICU) fighting for her life, paralyzed and unable to speak with absence seizures as well as other neurological problems and altered consciousness.

The new doctors treating her in the ICU were concerned and told us she may not make it through the night as her body was shutting down, and they were concerned her respiratory function may go next. In the ICU the doctors said they would have to rule out meningitis and would have to do a lumbar puncture without sedation due to how far gone she was. They requested that we hold her down since there was no sedation. After the lumbar puncture was negative, they diagnosed her with acute disseminated encephalomyelitis, or ADEM, and at the time, it was believed to be a “one-time illness”. After getting high-dose steroids she was able to come home, and it took over a month to get her walking slightly on her own, out of diapers again, and drinking without a straw. The next 18 to 24 months we had her in therapy to help make almost a full recovery with only a slight cognitive delay being noted.

At the end of January and beginning February of 2016, this supposed “one-time illness” attacked again. For three weeks, we took her to 15 doctor visits with nine different doctors and three hospital visits to be told nothing was wrong and that we were overreacting. At the end of the three weeks, Isabel woke up completely blind in her right eye and losing vision in her left eye. She was also having extreme behavioral changes and severe headaches again. We continued to fight against these doctors, and three weeks after the start of these symptoms and almost two years to the day of the first attack, she had a full relapse of ADEM with optic neuritis (ON).

Doctors then said that we were somewhat right but also wrong in that it was not a relapse but what they thought was multiple sclerosis (MS), a diagnosis they gave without doing any testing. They then tried to treat her with MS drugs, but we refused. We had already done a great deal of our own research, and going on what we learned, we requested a new test for the anti-MOG antibody which they did not do because they did not know what it was and had never heard of it. We knew that the MS treatment would make patients with MOG antibody-associated disease worse and we did not want to chance it without her first being tested for the anti-MOG antibody. The local doctors refused to test her, saying again that we were wrong, that this was MS. After almost being misdiagnosed again in Orlando where we live, we refused to listen to the doctors. We felt what she was having was an even more rare version of her illness called multiphasic ADEM, or MDEM, which is a form of recurrent ADEM primarily caused by anti-MOG. We reached out to multiple hospitals and only Boston Children’s Hospital and Children’s Hospital of Philadelphia (CHOP) contacted us back. Others told us to go to Philadelphia Children’s Hospital. We chose Boston Children’s first, not only because they called us back about a week before Philadelphia Children’s, but also since we were racing against time. Our local doctors were now saying we were withholding care from our daughter since we were not giving her treatment for MS. We needed to do something fast.

Within several weeks, we raced to get an appointment, and in April of 2016, we flew our daughter up to Boston Children’s Hospital to be seen by Dr. Gorman and to get properly diagnosed. The doctor there ran several tests and even tested her for the anti-MOG antibody per our request. He was surprised we even knew about it as the test was still in the research stage, and he told us that most neurologists probably did not even know about this test since it was so new. Boston Children’s tested and ruled out multiple sclerosis and neuromyelitis optica spectrum disorder (NMOSD) at the time. We then went home pending the anti-MOG antibody test which was sent to the Mayo Clinic and weaned her off the steroids over several weeks. She then relapsed almost immediately after ending the steroids in May of 2016 with optic neuritis only this time. In May 2016, after her third relapse, new local doctors again said she had MS due to the ON. It was when we reached back out to Boston Children’s that we were notified that her MOG test came back positive, and she was then put on oral steroids to hold her off until a plan could be made and put into place. Boston Children’s contacted her new local doctors and began working with them and the diagnosis of MS was dropped.

Boston Children’s also asked us to continue with Children’s Hospital of Philadelphia as Dr. Brenda Banwell and her staff were the only notable doctors in the United States at the time who had treated MOG pediatric patients and were familiar with MOG, as they were doing research at the time and were collecting samples. Dr. Gorman also reached out to several doctors familiar with MOG in Germany, the UK, and Australia for additional discussions about MOG as it was still so new, until we could get to Philadelphia. After consultation by Boston Children’s, the decision was made to put my daughter on a treatment plan of Intravenous Immunoglobulin (IVIG) infusions to see if this would help her. IVIG was approved but we were only about two weeks away from an appointment in Philadelphia and held off until we could see Dr. Banwell, since she was familiar with the illness and so she could do the treatment since our local doctors did not know how. We were hoping she would also save a blood sample pre-IVIG for research purposes, which Dr. Banwell was able to save as well. She began treatment in August of 2016 at Children’s Hospital of Philadelphia and has continued with IVIG every 4 weeks since. She continues to receive treatment at the local hospital under the supervision of Philadelphia and Boston. We have been back and forth between Boston and Philadelphia now every three months, alternating between the two hospitals for two years now.

My daughter has had 32 treatments as of this writing. She also had severe complications six times with the IVIG including her first treatment in Philadelphia. Of those six, four of the times ended up with a bad reaction called drug-induced aseptic meningitis, and the doctors up north began discussing possibly switching to chemotherapy-type drugs. We held them off from switching her treatment for personal reasons, and instead she stayed on the IVIG. The IVIG infusion was modified – we slowed it down and added additional medications to help ease her side effects. She is still testing positive for MOG antibody-associated disease and treatments will continue, though they are no longer discussing chemotherapy as she has made such a great recovery with IVIG. In fact, the recovery has been incredible with no major symptoms noted, even recovering fully from all previous paralysis, seizures, major behavioral changes and blindness, to name a few. She continues to have very mild chronic pain symptoms, though they are becoming further apart with each treatment. Now, the pain is lasting only one or two hours instead of days and only happens once a month now if at all. We have also found things that trigger bad days, such as heat intolerance, and have done well to minimize triggers. We believe her progress is because of our current team of doctors, her treatment, and our immediate family unit of mother, father, and brother. We believe this is the key to her recovery.

With our daughter almost passing, and after being told that we did not know what we were talking about regarding her condition, we made a promise to ourselves that we would never be told that again when someone we loved had their life on the line. So, we began to learn everything we could about her MOG and ADEM/ON diagnosis. We share this story to help others who have gone through this as well. We have participated in multiple studies and have shared much of the information we acquired throughout the years to help others. With knowledge of their conditions, people are able to become better advocates for themselves. This year, we were invited to join an advocacy group for MOG-ab disease called the MOG Project as part of their pediatric advocacy. We have also joined the Transverse Myelitis Association as advocates and peer support group leaders for Central Florida. We do this to help further the sharing of information and knowledge as well as to help those who are going through this and similar illnesses to know that they are not alone, and we together as a community will help each other build towards a better future. You are not alone, we see you and we are here together. Do not give up hope and you are stronger than you imagine.

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But You Don’t Look Sick: Living with Transverse Myelitis

By Alyson Seligman

I don’t look sick.

In fact, I am proud to say I look really healthy.

You’d never know that I’m often in some level of pain. In fact, you might look at me and think, “she’s for sure exaggerating.” I promise you that I — like others living with a chronic invisible illness — am not.

I have transverse myelitis, a one-in-a-million neurological disorder characterized by inflammation of my spinal cord. Turns out that the spinal cord operates pretty important stuff in our bodies.

I’ve been lucky in the sense that I’ve had a largely huge recovery. When you see me, you would never know that eight years ago I was paralyzed from the chest down, with doctors uncertain if I’d walk again. When I was admitted to the hospital with a four-month-old at home, I couldn’t even hold a pen.

A year later, I looked better. Except, like so many others with chronic conditions, I still have plenty of “stuff” below the surface.

It’s not like we have a cast on, are in a wheelchair or have a physical indicator that we’re not feeling well. Someone with MS, an auto-immune disease, Lyme disease, chronic migraines, depression, etc., all have varying levels of pain not externally visible.

Thinking of my former self, I can imagine it’s virtually impossible for a healthy person to understand.

Or for me to explain.

It’s just that, how do you explain to someone who’s healthy inside and out that even the most basic day of someone with a chronic illness is nothing like theirs? 

Then it clicked.

Someone in the transverse myelitis Facebook group I recently joined shared the “spoon theory,” by Christine Miserandino. If you know someone with a chronic or invisible illness, this read is so worth five minutes of your time.

As I started reading, I felt eight years of feelings burst inside me.

This.

This is how I feel every day. I don’t vocalize it. I don’t like to give power to it.  And I never had such a helpful way to explain it.

I started hysterically crying. It was an incredible “a-ha!” combination of comfort and understanding.

The spoon theory basically explains how anyone with a disability or chronic illness has a reduced amount of energy available for any sort of activity and task. If you start with 12 spoons today, how do you use them? Shower, take a spoon. Get breakfast ready for the kids, take a spoon away. Run an errand, take a spoon. And, while you can sometimes borrow a spoon from tomorrow, you’ll eventually run out. Yup, I get it.

As incredibly grateful as I feel to have family and friends support me, I can’t expect them to fully get my daily life.

Honestly, it’s only been in recent years that I’ve fully understood that the lack of understanding — for my rare diagnosis and that I’ve been fighting against having a disorder since it was invisible to everyone — made me feel compelled to “show up” even when I candidly didn’t have the strength to be standing.

I’ve been lucky along this journey to now have four friends who I love like sisters who also deal with invisible illnesses. Only one has transverse myelitis, but we get each other in a way we have each discussed others simply cannot. They’re fiercely strong, beautiful, driven, inspiring women who fuel me and get me in a powerful way. I’m eternally grateful they’re in my life.

So, I’m writing this because I think we can all benefit from making the invisible visible.

You see my face and you see a healthy person.

(Thankfully you also see a happy person… because I am!)

You don’t get that my feet and legs are constantly tingling, that my feet can’t tell the difference between extreme hot and cold (lovely for pedicures!), that my back can feel like it’s burning from the inside and I can have intense exhaustion that I wish was the level of a regular working mom. And, that doesn’t even include my bladder that doesn’t work at all and requires me to use a catheter to empty.  I know where every single bathroom is wherever I go or wherever I am traveling. The bathroom situation alone at Disney and concerts and art festivals and green markets gives me intense anxiety.

Please know that I’m not writing this for pity in any capacity.

This diagnosis has interestingly given me so much; I have an incredible level of compassion, strength and willingness to fight for myself, for self-care, to think less about what others think about me, and to know I’m capable of anything. It’s reminded me about what’s important in life, and the type of people I will surround myself with.

While I’m definitely not looking to be the poster child for the “invisible illness crew” (are we a thing?! ha!), we could all use a reminder — me included — that people have stuff.

And, that kindness, compassion and a little extra patience are always a good decision.

You can find more on Alyson’s blog, The Modern Savvy, here: https://themodernsavvy.com/.

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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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