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Kandias’s Story: Success After Braving the Unknown

A warmly lit portrait of Kandias smiling softly and contently with long red hair and black-framed glasses.

My first isolated neurological episode was in 2001.  It was a stand alone episode that mimicked a stroke.  After four hours in the ED they sent me home with no answers.  In March of 2003 I was having weakness with pain as well as visual disturbances.  I scheduled back-to-back appointments with my PCP’s PA and the ophthalmologist.  The PA said “nothing’s wrong with you”.  The ophthalmologist said “it might be MS”.  Both doctors had the same information from me!  

Except for a medicine cabinet full of prescriptions, over the counter pills and supplements to reduce my many symptoms (not all MOG), I cope by staying in touch with friends and family through Facebook and Instagram. I can see enough that by increasing size I can enjoy online comics. I have found some new favorites and am trying to catch up.

A happy group photo staged in Kandias's living room. Seated is Kandias, surrounded by family, including her mother and her sister, along with her sister's two children, their spouses, and kids.
Kandias is standing outside posed with her nephew as they embrace each other side-by-side.

I was treated for MS for four years before my first neurologist gave up on me and sent me to the Rocky Mountain MS Clinic in Aurora, CO.  The PA there saw me 15 minutes and said “sounds like NMO”. I never tested positive but they were sure it was within the Spectrum.  

Between June of 2007 and June of 2019 I continued to test negative for everything.  Dr. John Corboy led my team and relied on input from Dr. Jeffrey Bennett, the neuro-ophthalmologist also at the clinic.  In May of 2014 I became legally blind after a very bad attack.  The attacks continued at least three more times over the next two years.  Back in 2016 I had an attack just two weeks after what would be my final Rituxan infusion.  Dr. Jeffery Bennett was on call that weekend and said “enough’s enough” then started the process for getting me Actemra infusions.  He tried the previous year to get me in the trial but they had said no.  By the time I was released from the hospital the insurance had approved my Actemra infusions.  I go every four weeks.  March of 2016 was my last attack!  I tied my record of four years relapse free last month.  June of 2019 I finally tested positive for MOG antibody disease.

I have a good team of doctors and they usually defer to the neurological team. The tough part is when something new starts up. Is MOG-AD causing it? Age? Or something new!

My day-to-day symptoms include severe visual disturbances and moderate muscle weakness.  Often there is vertigo and increased body pain but it isn’t a daily thing.  My pain is controlled as best as can be expected.  On bad days I take the strong meds and rest.  Luckily, those days are less frequent than they used to be.

A close up and endearing photo of Kandias on the left, her sister Molly on the right, each leaning toward their mother Myrtle seated between them.
Staged on a light brown couch against a tan wall where a painting is hanging above them, Kandias is seated on the floor facing the camera. She is leaning back on the couch where her brother, Gary, her mom, Myrtle, her sister, Molly, and her dad, Bill are seated.

I have a handful of friends from my old life that stay in touch, one of whom takes me to Aurora whenever I need to go.  My mother and I live together and she is a great help…even at the age of 83.

By Kandias Overton

 

Written in 2020, republished for 2023.

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Massachusetts General Hospital
Harvard University

Michael Levy, MD, PhD

Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where he was one of the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.

Clinically, Dr. Levy specializes in taking care of children and adults with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease and acute disseminated encephalomyelitis. In addition to four monthly clinics, Dr. Levy is the principal investigator on several clinical studies and drug trials for these conditions.

In the laboratory, Dr. Levy’s research focuses on four main areas:
1. Development of animal models of neuromyelitis optica (NMO) with the goal of tolerization as a sustainable long term treatment: His team generated a mouse model of NMO based on pathogenic T cells reactive against the aquaporin-4 water channel. Now, they are using this mouse model to create a tolerization therapy to desensitize the immune response to aquaporin-4.
2. Genetic basis of transverse myelitis: His team discovered a genetic mutation in VPS37a found in a group of patients with a familial form of transverse myelitis (TM). To understand how this gene is involved in this immune process, they generated a mouse model with this mutation.
3. The immunopathogenesis of MOG antibody disease: This may depend on a subset of T cells called gamma/delta T cells. These specialize T cells react to MOG in mouse models and attack the central nervous system. In addition to understanding why and how these T cells are involved in MOG antibody disease, they are developing a treatment to target these cells.
4. Biomarker assays for other autoimmune diseases of the central nervous system: They are developing assays that detect autoreactive T cells in NMO and MOG antibody disease. In parallel, they are screening for novel antibodies to glial cells in related disorders such as encephalitis and optic neuritis.