Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
My NMO journey started after my 29th birthday in January 2016. I had a headache that would not go away. It was unlike anything I had experienced before. At the time I had just embarked on a new semester in law school. Everyone around me thought it was just law school stress. The headache got progressively worse. One of the problems was living in a rural area in Vermont. The medical center gave me some medicine for the pain, but once I was discharged, within an hour the pain was back. I went to another health-care facility in New Hampshire, where I spent two weeks in neurology and was diagnosed with something called syndrome of transient headache and neurologic deficits with cerebrospinal fluid lymphocytosis (HaNDL). I was told I would have a headache for months, but there wasn’t much else they could do.
I was devastated as my head still hurt and I was discharged. What was concerning was during this time I had a bunch of tests run on me. The doctors found something in my brain, which turned out to be white blood cells. I didn’t know what that meant only, how did they get there and what could they do? The doctor said she wasn’t sure how they got there, but it would be very rare if they moved anywhere else in my body. I pleaded with the doctors to check my eyes, as they had begun to hurt. It was a fight to get examined by the eye clinic when I was an inpatient in the hospital. The eye clinic said they didn’t see anything wrong. I couldn’t believe it; I asked if they were sure because my eyes were hurting me. The discharge was set and I went home.
The next day, the pain had gotten worse in my head. My eyes started to get blurry. They slowly began to close. My classmates had taken turns just sitting on my couch and watching me lay down and try not to move. My professors said I looked awful and should just go home and lie down. I couldn’t eat. I just drank fluids. I went back to a medical center in New Hampshire three or four times the same week after I was discharged and told them I couldn’t see. The blurriness had turned into smaller and smaller spots until it was just darkness. I couldn’t see anything. Everything was black.
I asked to only see the neurologists now and not the attending physicians at the Emergency Room as the attendings were not very helpful at all. It took the neurologist on call about 30 minutes to say “Well, we can’t discharge her again, she came back about three times already” to her colleague. She asked me what was wrong again. All I could do was cry because I had been saying my head hurts and I can’t see. I am not sure what part of that people didn’t understand. I even broke it down, “if you stand in front of me and hold up your fingers I cannot see anything, but I can feel the wind from your hand in front of me.” It is crazy how other senses step up when one of them is down.
I was then given an MRI, lumbar puncture and various other exams. By the next day, I had a team of people come into my room and tell me I had something called Neuromyelitis Optica (NMO). The doctors said they sent tests to the Mayo Clinic and this is the diagnosis that came back. By this time I could not see, I couldn’t go to the bathroom, and the lower half of my body didn’t work. I couldn’t walk on my own or really move my lower body without help.
A doctor came in and asked if they could put a port into my chest and do something called plasmapheresis. I agreed, because it had been a number of days and the doctors couldn’t tell me if I would get back my vision or my ability to walk again. Plasmapheresis would be the next step in trying to reverse the damage. I went into surgery to get the port placed in my chest. I remember the pain I had from the port and the swelling. I was also being given steroids. I was now seeing an occupational and physical therapist. There was talk about going into a rehab center. There would be some doctor’s visits for a while. My vision still took a long time. One day I could see spots, then gray outlines of people until it got better. My friends and everyone had been very supportive. They helped me through the difficult times. The next conversation surrounded a medication. I decided to try Rituximab. My initial question was, would I lose my hair. How long would I have to be on this medication and what are its risks?
The answers were no you wouldn’t lose your hair. You may need to be on this for the rest of your life to prevent an attack.
I dealt with some classmates not understanding. I got the “you look normal” attitude. They couldn’t understand if I had a bad reaction to Rituximab and needed to use a walker for a few days. They couldn’t understand why I needed so much sleep. They couldn’t understand getting Rituximab at the cancer center, if I didn’t have cancer. They definitely didn’t understand me wearing a mask if people around me were sick.
Now, I am constantly in need of sleep. I describe it as a tiredness that takes you down. I can sleep for an entire day and not wake up for the bathroom, food or anything. My blanket statement about my eyes is: “Every day there is a different view.” Glasses are a must. My legs can feel like rubber bands about to snap. My neck and back are terribly tight. I can’t hold my bladder functions and sometimes get nervous about not being able to make it to the bathroom on time.
This is difficult for someone who was a Division I basketball player. I want to do activities and go various places but NMO has changed that. I want to make sure people are not sick around me. I want to make sure I can handle walking, stairs, or even the weather. If I go out for a long period, it can take me at least two days to recover from any activity, no matter how simple it may be. I try to have a smile on my face but sometimes it is difficult. I want to meet other people with NMO and see how they are doing. I want to see if we are battling some of the same effects and wish everyone well.
So far I worry about being able to have a career. I wonder how I can disclose to an employer that some days may not be good ones. I wonder about having a relapse. I wonder if I will lose my vision. These things come and go but mostly I just try to live life to the best of my ability. NMO definitely gives you a different perspective on things.
We can all manage NMO together.
Published August 1, 2017
