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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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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