By Scott Garland
Since I started at the Genesee Sun, I’ve encouraged readers to suggest ideas, issues and topics you would like to see me cover. Recently, a daughter and her mother, Ashley and Lynn Copeland did just that. They told me of a rare disease that and often goes misdiagnosed as muscular sclerosis (MS). This disease is Neuromyelitis Optical (NMO), and today I will share what NMO is and how it has affected the Lynn Copeland’s life and her family as well as the lives of many others who have been stricken with this rare disease.
NMO is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin (fatty, protective sheath covering of nerves) that almost exclusively affect the optic (eye) nerves and spinal cord. It usually causes temporary blindness, occasionally permanent, in one or both eyes. It can also lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation, and bladder and bowel dysfunction from spinal cord damage.
In Lynn’s case, her symptoms started in 1998 when she was stricken by sudden blindness in her left eye. It was at this time that she sought the advice of a neurologist who said it was most likely MS but they would have to wait for another episode to run further testing. With the help of steroids, Lynn regained her vision in her left eye.
Lynn would go without an attack until 2004 when she again lost vision in her left eye but chose not to do steroid treatments because doctors told her vision would eventually come back anyway but it may take longer without the steroids. During this time, Lynn also lost vision in her right eye and started a steroid treatment. After that, she regained vision in her right eye but is now permanently blind in her left eye.
Lynn described her experience in the hospital after losing her vision and her eventual MNO diagnosis.
“In 2004, when I was hospitalized for my vision loss, I was told by a doctor – with no bedside manner and in front of my young daughter – that I should start dealing with the fact that I have MS, for both MS and Devic’s patients develop spinal lesions,” she said. “Fortunately, I had a second opinion and when this neurologist reviewed my MRIs he noticed that the length of my lesions were much longer than that of a typical MS patient. Normally MS patients have smaller spinal lesions and bigger brain lesions. Along with the optic neuritis, my Doctor decided I should have the IGNMO antibody, for which I tested positive. At this time only the Mayo clinic was doing the test so he sent my blood work to their clinic.”
The common problem with NMO, because it is often misdiagnosed as MS, is that patients like Lynn are given the wrong treatment method. MS medications will not work on patience with NMO, and often administering incorrect medications can make patients sicker and even lead to their death.
Lynn’s day-to-day life has forever been changed by her having NMO. She can no longer hold a full-time job due to all the symptoms (she had been a collections manager and loved her job). She can no longer fully enjoy activities such as do-it-yourself projects, going to concerts and festivals or being outside for activities due to lack of energy. If she does attempt or plan to attempt any of these activities, it could take as much as three days for her to fully recover. In spite of this, she does not view herself as disabled because she is not paralyzed or wheelchair-bound.
Her daughter Ashley described how NMO has affected Lynn’s loved ones.
“I was 17 when I found out my mother, my best friend, had a rare disease, and it shook me,” Ashley said. “I was terrified, but in the long run I have come to see just how strong she truly is, and I am inspired by her courage and perseverance and am thankful to have her in my life. When you face something like this, you’re forced to grow up a lot quicker – because you now you know she might not be able to do all she has done for you your whole life. She can’t go everywhere we want her to go and come to every event we have, and if we make plans for something, we have to understand that they might fall through because you are not sure how she will be feeling. It has helped us to gain understanding and patience in that sense.”
Lynn and Ashley said overall this has made them aware how much they cherish their family and the strong bond and love they all have for one another.
Lynn said she would not be where she is now without the love and support of an online community of people with diseases like her and a foundation the group got her involved with.
“Originally I found a Google Devic’s disease group which helped because I met people who knew what I was going through,” she said. “This site led me to the Guthy Jackson Charitable Foundation (GJCF), and I am now an active member of their advocacy group. Out of everything the organization has done – the best part is building relationships with other NMO patients and being able to meet with them face to face and talk about our disease, symptoms, and about our lives. This makes you realize you’re not the only one with this disease. GJCF also has a repository where they take blood samples of you and your family to research the disease. Victoria Jackson and her husband started this organization after her daughter was diagnosed with NMO and have put over $17,000,000 of their own money into this in hopes of finding a cure. They are parents on a mission.”
I would like to thank both Lynn and Ashley for bringing this story to my attention, and on their behalf, I encourage anyone who was diagnosed with MS to seek another opinion just to make sure they don’t have NMO and have been misdiagnosed. There is currently no cure for NMO only medications to help prevent and manage the severity of attacks when they occur, but it is the hope of Lynn and Ashley through research foundations like the GJCF and columns like mine raising awareness, that someday soon a cure will be found. I can tell you after interacting with Lynn and Ashley – feeling and hearing their passion for the cause – I hope and pray this happens.