I got MOGAD, and I was not sure whether I should talk about it. Would I attract unwanted attention? Will folks judge me? Pity me? I don’t know. But April is supposed to be MOG awareness month, and I read enough about other people speaking out about it. After weeks of contemplation, I decided to write about it.  

So here goes.

Before MOGAD came into the picture

It all started with a fever, general weakness, and some trouble with walking. Maybe internally, it had started long before that, but who knows? The first sign of alarm was when I could not pass urine. “I am just dehydrated, ” I told myself, drinking more water. And I did manage to urinate after that. My mind was not ready to accept what was happening. But the sense that it was not going well kept nagging me. I felt my energy returning that evening and decided to wait.

The next day, I did not see any improvement. I felt my legs getting weaker. Then I fell down when I was hobbling to the washroom. That was it. It was time to go.

Akshob took me to the Emergency Room that evening. It’s probably UTI, I kept telling myself. The back of my mind was holding back a giant-sized panic bubble about ghosts of my past! I was waiting for what the doctors had to say. I did not want to give them ideas. How stupid of me, now that I think about it. 

Maybe, a part of me did not want to accept that it could be happening again. As if admitting it out loud would make it worse. Maybe, just maybe I could stifle it in and it would all go away! 

Urine and blood samples were given, and I waited in a wheelchair for the results. Jennifer, the examining doctor at the ER, came to talk to me. Can you walk with me for a distance? I am worried about your walk. She said, holding a hand ready in case I lost my balance.

Your blood and urine tests have come back clean. The next thing I can think of is an MRI to see what’s going on, she said.

I think I should tell her. I texted Akshob from my examination room. He agreed.

So, doctor, I want to share something. I am not sure if it is relevant. But this looks like something that happened when I was a kid. I was diagnosed with Transverse myelitis when I was 8.  

There! The ghost is out.

Oh! You were? Tell me what happened back then. She said with such kind eyes that I wanted to hug her. By then, another doctor had joined us. She noticed that I was shivering uncontrollably and brought me a warm blanket while I told them. I had lost sensation and mobility in my legs. I could not urinate. Hospitalized…took me three months to recover.

What did they treat me with? I did not remember. 

Did I have any symptoms later? No.

Thank you for telling us. Dr.Jennifer said warmly. This is helpful. We were trying to rule it out, but it could be the same now that you mention you have a history.

We don’t know for sure yet. We are going to get an MRI of your spine and decide the course of treatment. We may have to keep you overnight for observation. I will leave you now, but a neurologist will see you in a bit. 

Now that the ghost was out, I felt strangely calm. The lingering doubts I was refusing to accept were slowly becoming reality. It is what it is.

The neurologist came next. He asked me questions, made me repeat my story, and tested the strength of my legs. He said I would be taken to the MRI scan shortly. 

If you have ever had an MRI, you will know you get into a cylindrical chamber on a stretcher. There is a lot of whirring, banging, and drilling kind of noise while the machine scans you for abnormalities, moving you back and forth within the cylinder. You have to lay absolutely still so the pictures this machine takes are clear. Depending on the requirement, this could go on for 30 minutes to an hour or more. You may have to redo parts of it if you move. If you have never had an MRI, now you know!

So Dr.Gill was my radiologist, a senior-looking gentleman who awkwardly helped me onto my stretcher as he tried to gauge my predicament. To help with the noise, he gave me headphones and to my delight, played some Hindi music. He checked on me now and then to ensure I was as comfortable as possible under the circumstances. 

Then they took me to the X-ray room for a chest X-ray.

After the MRI and X-ray, I was moved to the observation room, where they got me on saline. Akshob could finally join me. He was worried sick.

Dr. Lau, brought my reports. He said there is a strong likelihood that it is transverse myelitis (they did not want to commit to it yet). As to what caused it and how it happened, they did not know. They were trying to get hold of the neurologist who would further inform us of the situation and course of action. I would be admitted as soon as a room was available. 

In the meantime, I was given a dose of IV steroids. This dose, I later learned from my further readings, was a crucial necessity for my recovery as it prevented any further aggravation of my condition. 

Condition worsens!

They moved me to my room early the following day. Akshob had gone home to get some rest.

By the time I had my breakfast of toast and fruit and met my day’s nurse, he was back by my side.

Dr. Renda, my neurologist came to brief me about my situation. She spent a substantial amount of time giving us a bleak and overwhelming list of possible conditions I might be having, including Multiple Sclerosis (MS), which was her worst fear.  She said I would need some more tests for the diagnosis – more blood tests, a lumbar puncture, an ultrasound, and a head MRI.

The ultrasound revealed that I was not voiding my bladder fully. My bladder was so swollen by then, and I was shocked to see that I did not feel a thing about it. They got me on a Foley Catheter (It’s a tube inserted into the bladder with a hole on one end and a bag on the other. They inflate a little balloon once the tube is in your bladder, so that it stays in and collects the urine directly into the bag).

Sometime in between, a lab nurse came in with what looked like a dozen test tubes to collect my blood samples. 

Afternoon, I had my lumbar puncture. I had had this done before (back when it first happened), and I remember it being painful. And I remembered it right. 

Despite the anesthesia and all the warm blankets and pillows to comfort me, I could feel the needle sucking out the fluid from my spine, and suddenly, a pain shot up my leg like my whole leg was on fire. The needle had hit a nerve. Nothing to worry about; it’s alright, they said as they readjusted the needle. No harm done.

I had to stay for 20 minutes after the procedure for observation. As I was trolleyed out, I saw the lab nurse approaching me with an apologetic look on her face. She had come back for more blood. 

As the evening wore on, my legs were getting weaker and I could not lift them up to get on and off the bed by myself. I was hoping against hope that they wouldn’t die on me like they did the last time. 

They were so weak by evening that they had to transport me for my head MRI using an inflatable bed on the stretcher. There was no Dr. Gill this time. A young, funky doctor who called me “Hon!” reeled me in. I had to make do with regular instrumental music on my headphones. Luckily, the scanning was done in 20 minutes, and I was back in my room. 

Akshob was asleep on a makeshift chair that pulled out into a bed that looked like it was made for him. Anyone larger than Akshob would not fit in.

Thank God it’s not MS!

Dr. Renda told us the MRI result would give us a direction on what treatment to start. As promised, she was back the next day with the news.

My brain MRI came clean except for a tiny flair, which any healthy person might have. I had no lesions to indicate there was no MS. 

With this information, they could decide on my course of treatment. I was given antibiotics for two days in case I had any infections. I was then prescribed a high dose of steroids (1000 mg) for five days. My progress and response to this course would decide how to continue the same.

In the meantime, an Occupational Therapist visited me and helped me get out of bed and clean up. She suggested I sign up for Acute Rehab, which would help me learn to go about my daily activities independently while living with my condition. She said there would be others like me, and it would be a hospital-like environment where I would have nurses to help me.

A physical therapist came the next day and made me exercise so I wouldn’t wear out in bed. I could see that I was slowly gaining strength in my legs, and I could wobble around with a walker.

The telemetry department closely monitored my heart rate. A nurse would come running to check on me every time my heart rate went above normal or if my heart monitor got disconnected by mistake. I got timely meals from the hospital cafeteria (with Indian options like dal makhani, chana masala, and palak paneer and rice). 

A team of two came to check on my respiratory functions every 12 hours. I had to do some breathing tests to see that my lungs were still doing fine.

Each day, a different nurse attended to me day and night, checking my vitals, giving me medications, changing my bed, and helping me clean up. Someone from the lab came in every morning around 4.00 or 5.00 AM to draw blood. That was a routine check. My hospital bed had a remote attached to it, so I could operate lights and TV and even call for help in an emergency without having to move from my bed.

Akshob stayed with me all through this time, leaving me only for a few hours to go home and freshen up. Friends visited me regularly, bringing home food and fresh fruit and keeping me company. Needless to say, I was well taken care of—pampered! Words would not suffice to thank and repay the good turn I received from each and every one of them.

The Verdict

My test results kept coming in daily, and I realized that my blood samples had traveled to San Diego and North Carolina to determine what I had. The names that came up in the results were terrifying. It was, however, a relief that they all came in negative. It was clear that the doctor left no stone unturned while ordering the tests.

What I did have was revealed a few days later. It was the weekend, and Dr. Renda was off. A new result had popped up in the My Health Online app. Something about MOG Antibodies. We pointed out the results to the doctor on duty.  He drew a blank, “Your Google search is as good as mine!” he said, too honestly, I thought. And that’s what we did. By the time Dr. Renda was back, we were well-versed with this new rare disease, reading various articles and research papers, absorbing and processing as much as possible.   

Quick facts on MOGAD

 – Myelin Oligodendrocyte Glycoprotein Antibody-associated Disease (MOGAD) is a rare demyelinating inflammatory disease identified in 2007.  It affects the central nervous system, including the brain, spinal cord, and optic nerves.

– Patients with this disease usually test positive for anti-MOG antibodies at some titer value.

– The cause of this disease is unknown, and since its symptoms often mimic those of neuromyelitis optica spectrum disorder (NMO) and multiple sclerosis (MS), it is often misdiagnosed.

– Common symptoms include vision loss, limb weakness, and sensory disturbances. It may also cause sensory loss and changes in bowel and bladder functions.

– There are currently no approved treatments for MOGAD. Treatment often involves managing acute attacks with steroids and sometimes plasma exchange. Maintenance treatments can include immunosuppressants to reduce the risk of relapse and manage ongoing symptoms.

In simple terms, it is an autoimmune condition in which the immune cells attack our own cells, mistaking them for foreign pathogens. In this condition, the targeted cells are the myelin cells, which form the protective layer of the nerve cells. Your symptoms reflect where the cells are attacked. In my case, it was a certain section of my cervical spine.

The neuro was back on Monday. She said little more than our Google studies. However, she did say it was not her area of specialization and that she would refer me to someone who was. This new doctor would take it forward and help me with my future treatment and recovery. 

She was also excited about my progress in walking and suggested we make a void trial with my bladder. A void trial involves removing the Foley catheter and waiting for my bladder to start functioning by itself. So they removed the tube. We could only wait now!

Meanwhile, a physical therapist came to assess me. She made me do a series of exercises, took me out for a walk, and made me climb stairs (because I live on the second floor). She said that I looked good and that she would send a report of my progress.

The day came to an end and my bladder was still sleeping. It was sufficiently filled up, and though I had the urge to go to the bathroom, I could not void. After several failed attempts, I began to feel hopeless. It had also begun to hurt from the pressure. Scans showed I had filled up beyond a liter. They had to catheterize me again- a painful and nightmarish episode I do not wish to recount. 

The Rejection 

By now, I had completed my five-day steroid course, and I would now be switching to oral medication hereon.  Diagnosis was done, and medication was prescribed; there was no reason for the hospital to keep me anymore. 

On the morning of 12th December, our doctor brought the news that the Acute Rehab Center had rejected me. I was too fit to be accommodated by them. Though this was something to be happy about, we were deeply concerned. 

I still had a long way to recover, which we hoped the rehab would help me cope with. Plus, I still had the Foley. We knew nothing of Foley care given the indefinite time I had to have it in.

I was at risk of infection too. It was the fear of unknown, more than anything.

They were apologetic, but no, I could not stay at the hospital. I had to go. However, they would assign home nurses to check on me regularly, and I would have all the help I needed. I could go for physical therapy as an out-patient. 

With that consolation, I slowly walked out of the hospital holding Akshob’s hand. The vision of my grandfather carrying me out of the hospital 25 years ago came to me. I had done it back then, and I did it again. I will do it again if I have to.

Hope is where Home is

I am happy to say that it has been a slow but progressive journey since then. I have had to make several adjustments to my lifestyle, including food, clothing, and even simple activities like walking, sitting, and sleeping. I don’t exaggerate when I say that. 

A few failed void trials and a UTI later, I got freed from the Foley in February (Hey, I alliterated!).

Several follow-up tests, doctor visits, and physical therapy later, am I 100% fine? Not yet. I have my issues, but I feel fine. I am independent, happy, and grateful for life.

I am still on medication. I cannot stop the steroids right away. If I did, I would have withdrawal symptoms, and I risk relapse. The right way is to taper the dosage gradually and bring it to a stop. Steroids have their own side effects, but that’s a topic for another day.

I am currently on a preventive care treatment called IVIG, where I get Immunoglobulin infusions every month. That’s something indefinite so I don’t get a relapse in the future. I await further instructions from my doctor. There are options for clinical trials which I am not currently interested in.

I have joined a couple of Facebook groups, a community of people with my condition. There is a site called The MOG Project which is an information hub for MOGAD. It reminds me I am not alone in this. I have had it easy if I can venture to say so. I see people in harder situations than mine and count my blessings.

The Second one is IVIG and SCIG Education and Discussion Board. This is a group started by a nurse, Bethy Buffy Garrett. She has been an infusion nurse for over 40 years and she is generously passing on her knowledge to everyone who seeks it.

After removing the Foley, we made a trip to Death Valley National Park. It took a lot of preparation, but I did it all – the hikes, walks, and the journey. It was exhilarating!

Through all this, I saw how hard my body fought for me and helped me recover. I owe it to my body to do good by it. I am focusing on maintaining a healthy lifestyle, working entirely on myself. I have a strict routine for everything: food, exercise, sleep, and yes, I am on a job hunt, too. It is time to get back on my feet.

Four months after the episode, I can finally bring myself to write about it. I write this partly for myself, wanting to have it out of my system, and partly because it is not a well-known condition. I owe it to others, too. It could happen to anyone at any time, but know that it is not the end. There is hope.

-Nivedita