A team of white coats and clip boards piled into my room.
My Neurologist checked my feet, my legs, my reflexes.
“I’d like for you to try and stand.”
I pushed my legs to the side of the bed and placed my feet on the floor. Arm spastic and drawing up into my trunk, I pushed my body to rise with little cooperation from my muscles.
Between my brain and my limbs, the connection was lost. I tried to rise with my body bending forward and back at the hip uncontrollably. Tears streaming down my face. My team looked away. I couldn’t stand.
“Ok…it’s ok..Go ahead and get back into bed.”
I felt the eyes of onlookers studying me as I crumbled. Vulnerable, I was losing everything. My ability to walk. My vision. My life as I’d known it. With an audience.
This brand of grief is deep and unrelenting. It’s acceptance comes only after you recognize defeat.
He explained what the next steps were. Something akin to dialysis called Plasmapheresis (PLEX) that would remove the plasma from my blood and take the antibodies that were destroying me with it. A port with three uncomfortably large tubes hung from my neck. PLEX removed the blood from my body while cycling it back in with a plasma replacement.
When that didn’t work, it was on to steroids. PLEX does work for most. Yet somehow, my symptoms got worse. I could see the look in their eyes when they realized there was no improvement. I didn’t want to stop the treatment. What if I didn’t try hard enough? What if this was the only answer? They stopped Plasmapheresis and moved forward.
By the grace of God, I improved a bit with IV corticosteroids and my first infusion of the chemo drug, Ritixumab. I was able to stand steady for the first time after that first infusion.
My doctor had chosen this drug because it’s kind of a “go to” for Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD). But in addition to that, I had signs of Multiple Sclerosis (MS) as well. From what I understand, using MS meds for a MOG patient can be dangerous and vice-versa. Ritixumab works for both.
I truly understood why we were using Ritixumab when I had a follow up report read to me by my general practitioner.
I have Anti Myelin oligodendrocyte glycoprotein paired with Multiple Sclerosis. Two distinctly different things, but similar in that they are both immune mediated diseases.
Immune-mediated diseases are a group of conditions that come about from abnormal activity of immune cells. An overreaction or attack to the body, extreme inflammatory responses or loss of the ability to recognize and fight against tumor cells.
MOGAD (Myelin oligodendrocyte glycoprotein antibody-associated disease) is rare one. It calls on something like 1 per 1 million people.
MS is a bit more common, but is a neurogenic demyelination disease, as is MOG. Having them both at the same time is almost unheard of.
Almost.
We’re all coming out of the woodwork now. Some still don’t believe it’s even possible. But those who carry the unlikely two understand.
We live in it.
In my case, this all started with a condition called ADEM. ADEM is also a neurological, immune-mediated disorder. It causes widespread inflammation of the brain, damages white matter and the spinal cord. It’s often mistaken for meningitis because it presents with with white blood cells in the spinal fluid, fever, extreme headache and confusion. It’s more common in children than adults at the onset of MOGAD or MS. I’m 39 years old.
Who woulda thought? I don’t blame the local hospital who treated me for meningitis. They couldn’t recognize it. But they gave me a chance. Everyone else passed over me. Threw me away.
Nine.
Nine is the number of times I was tested for COVID and sent home. It was the tenth visit that took no swab. No temp. Just pushed us out the door because I’d had a fever in their ER one week prior.
I was referred to that neurologist by the ER but turned away immediately. With fluid building on my brain, I was accepted and admitted at a different hospital a couple of hours and 100 miles later.
I was out of my head. I don’t remember how I got to the hospital. I don’t really remember most of August or September. Entire conversations lost. It’s all a blur.
They thought I had meningitis but couldn’t pinpoint which kind. So they treated me for bacterial, fungal and viral simultaneously.
The medications felt like death. I don’t remember anything from that time but the fear of dying. I checked myself out a day early against their wishes because I thought they were going to overdose me. On top of that, they’d transferred me to a room with a woman who had unspecified pneumonia. During a pandemic.
I’d lost 30 lbs. I was empty. I couldn’t do it anymore. I would die in my own in my house, in my bed. It feels strange to write these words.
But that’s how I felt.
The one thing that got me through was the steroids they administered over a 6 day period. And the oral taper they sent me home with.
For two months, I laid in bed, sick and scared to take all of the medicine I’d been sent home with. The side effects were horrific. Possibilities included separation of the Achilles’ tendon, hearing and vision loss, neurotoxicity. The list goes on.
But I was lucky.
I slowly discontinued them when I learned how dangerous it was to take them for longer than a couple of weeks. No one was attending the watch required for long term use. I was alone in that decision and it could have proven dangerous either way.
I’d been on them for months. Though I finished the steroid and continued the anti-fungal, I quit the rest. Something didn’t feel right and no one would listen. I was violently ill and losing muscle mass quickly. I couldn’t stand for more than 5 minutes. My legs weren’t working properly. I was dizzy, wildly unstable, and vomiting. I landed in another ER with dehydration. I was given no direction from the doctors.
And the doctors were all booked up. I couldn’t get in to see a doctor for quite sometime. COVID-19 was on the rise. Everything was impossible. So, I simply dealt with it and laid there; until I woke up blind.
I had kept up the anti-fungal drug, although the potential side effects include vision loss, among a million others. A fungal infection in my brain seemed the most likely at the time due to the patterns found in the MRI imaging of my brain.
I was malnourished. After stopping the antibiotics, I began to improve a bit. I could eat again. I was 40 pounds down by that point. I didn’t recognize the body I woke up in when the fog began to clear. I was still bedridden.
Then one day, my right eye went completely black. A few days before, the double vision hit and I couldn’t communicate my needs because I was so out of my head. I thought it was the side-effects from the medicine and medical professionals simply wouldn’t listen.
Then came another hospital admission. Another spinal tap, 8 days of IV steroids, and a lung biopsy. The suggestion of MS and Neurosarcoidosis with lung involvement had been brought to the table.
Then, I went on to a neurologist whose honesty saved me. He didn’t know what was wrong with me. And he was upfront about it. His suggestion of Neurosarcoidosis made the most sense to him. To be sure, he referred me to an MS specialist at UK Kentucky Neuroscience Institute. His colleagues who had worked with me during the last local hospital stay was convinced of MS. He was pretty sure of Neurosarcoidosis.
When I arrived at UK Chandler Hospital, MS Specialist, Dr. J. Chalkley, took one look at the MRIs of my brain and suggested an antibody test. The samples were sent to Mayo Clinic and came back with answers.
Just 3 days before Christmas Eve, I was admitted to the neurology wing at UK and given IV steroids to try and save the vision in my “good”eye. I went into the hospital this time with a definitive diagnosis of MOGAD.
Things cleared up a bit. I felt better than I had in months. Christmas with my kids, my husband and extended family was a breath of fresh air after the hell Id been through in 2021.
New Years Eve came in strange. I woke up with a heavy arm. My hand wasn’t working well. It felt as though my body was sinking my right side into the floor. I felt a downward pull by some sort of unrelenting force.
I waited a day to see if there was any improvement. New Year’s Eve at the ER during a pandemic didn’t sound very promising. But I couldn’t fight it. The next day, the feeling had gotten worse. Moving my fingers in a certain way caused both arms to jerk and be drawn into me. I felt like a puppet on a string. I had very little control and felt complete detachment from my own body. So we drove the two hours it took to get to UK Hospital.
By the time we pulled up to the front doors of the ER, I could barely walk. It happened that quickly. Dragging my foot behind me, I made it in. Triage didn’t take any time at all. When I finally had a bed, I couldn’t walk to it.
They worked fast and admitted me immediately. A temporary port was placed in my neck. The Plasmapheresis was prescribed to be administered every other day for 5 treatments, but failed. Steroids and Ritixumab to the rescue.
After two weeks in the hospital with significant improvements, they sent me to Cardinal Hill Rehabilitation Hospital. Cardinal Hill is an inpatient rehabilitation center. When I arrived, I couldn’t walk in those doors. But with the aid of my walker, and two weeks of therapies, my legs carried me out. On my last day at Cardinal Hill, I was able to lead a short yoga session for my AMAZING Physical Therapists.
Just before my initial ADEM attack in August, I had gotten certifications in yoga for children & teens with a focus in trauma release. That timing was an absolute gift.
PT, OT, Speech and Yoga put me back on track.
I did it.
Until a few weeks later when the heaviness started again and the words “Multiple Sclerosis” reappeared.
It was past time for my second Rituxumab infusion, late simply because the local infusion center failed to contact me.
I later got a call from them. The person in charge was someone I knew. She said my neurologist’s office hadn’t provided my phone number. She told me that she was my “friend” on social media. But, for some reason, she didn’t message me to ask for my phone number. And she failed to call my neurologist to get my contact info.
I was furious. I faced having everything I’d worked for ripped away because a phone call wasn’t made. It felt careless. But not everyone understands what rare diseases can do. Even people who work with them.
That part is up to me. In the grand scheme of things, the slip of my local healthcare system was actually a blessing in disguise.
I went two hours away to get this infusion instead of having it just 15 minutes from my house. I wanted to stay long enough to see my kids after school to say goodbye but my gut said “go now”. My childhood friend picked me up that afternoon and off we went. We stayed close to the infusion center that night and went in first thing the next morning. As I was sitting there, IV set, premeds in, my husband called. He tested my youngest for COVID and she was positive. I had been exposed. I’d hugged her the morning before. I already had one chemo infusion while admitted at UK Hospital, which is meant to immobilize IL6 B cells of the immune system. So taking another if I had COVID very well could have been a nightmare.
I didn’t risk it. I walked away without my treatment and a very heavy right side. My coordination was slipping again but I was still on my feet. The steroids I received in those premeds pushed me through. I stayed away from home for two weeks because my little family had COVID. It was devastating. I couldn’t help them.
Thankfully, they were ok. An amazing friend dropped off groceries and meds for them. The kids were over it in a couple days. My husband took about 5 days to get better.
What I did not understand before having chronic illness is how often we are forced to spend days, weeks and even months away from our children due to hospital stays, doctor visits….and viruses. I’d only been home 4 days after leaving Cardinal Hill Rehabilitation and had to spend 2 more weeks away. My kids are 5 and 8. That was more difficult than anything I’d been through.
More than the illnesses, the treatments, learning to walk, and write again. The most difficult thing I’ve ever done was to not be there for them. Over a month without my babies by my side. And they had COVID. My heart aches to know that I’ll never get that time back. What makes the absence sting a bit less is knowing that not getting my treatment on time was actually a blessing in disguise. Almost like a gift of safety from a higher power.
I got my second treatment after testing negative for COVID and locked myself away in the safety of a few different dear friend’s homes. I had been protected from catching the virus in so many ways. The area I live in was something like the top 3rd in the nation for COVID cases at the time. I couldn’t go home. It was like being at war against nature. I very well could have gotten COVID immediately after having had two chemo sessions. I don’t know what would have happened but I’m glad I didn’t have to find out.
More recently, a follow up with my general practitioner came. She read to me my neurologist’s notes.
“So you have MS and MOG?”
Six MRI findings, all consistent with MS. Two spinal taps resulting in 9 oligoclonal bands in cerebrospinal fluid (CSF). Spinal cord lesions + bilateral optic nerve involvement and transverse myelitis are indicative of MOG with MOGAD antibodies present in my blood.
This is my life now.
I’m having trouble picking my jaw up off the floor. It’s only been a couple days since I got the news about MS. After everything I’ve been through, I can’t say I’m not scared. I can, however, say that I know I am going to be ok.
If I go blind, I’ll adjust. If I can’t walk, I’ll adjust. If I can’t use my arms or hands…
I’ll adjust.
The only thing I really care about is being with my family and appreciating my friends. There’s nothing more important than that. If this experience has taught me anything, it’s to advocate for yourself. It’s to listen to your gut. Its to get help immediately, even if you have to fight.
It’s to take all the little things in life and hold them up with a grateful heart. Most importantly, I have learned the importance of family and friends.
Having the support of both is as rare as the diseases that brought me to this understanding.
Rare medical diagnoses are set apart because few have them. But those few are a rare breed because they are conditioned to lean into the bravery it takes to keep moving forward.
I can’t think of the big picture any other way. At least not yet.
I am alive.
I will take the blessing of this opportunity to raise my children and grow old with my husband.
I want to keep myself. And share my story. Share your story, too.
And most importantly…..
Fight like hell.
By Dara Hart Riley
