By Cindy Quense
December 7th, “a day that will live in infamy,” has taken on an additional meaning for me and my family as it marks the onset of my transverse myelitis. Thursday, December 6th was normal. I went to work at the Massachusetts Institute of Technology (MIT), but the morning of the 7th my right leg was “buzzing” and felt odd. I didn’t have work and we were going to help out at our son’s new house. I did normal activities, but all day I felt that my leg was off. That evening, I mentioned to my husband, Tim, that I noticed a strange sensation in the shower – I knew water was touching my right calf but had no sensation of temperature. I was thinking it might be an outbreak of shingles, which I had had about five years earlier on my right side. The nerve sensation felt similar.
On Saturday morning, I called my primary care provider (PCP) and asked if I should get a prescription for an anti-viral medication. As I described the issue and sensation, which was now also moving across my torso, she told me that’s not how shingles presents and told me to go to the emergency room (ER). We went and spent most of the day getting exams and several MRIs. They concluded that it was a pinched nerve and that I should have an additional lumbar MRI and see a surgeon on Monday. The next day, it was spreading into my left leg and I was having trouble walking. Knowing what the ER looks like on a Sunday afternoon, I called the doctor’s office to see if they could schedule the MRI. I was told it could only happen through the ER and if I felt worse, I should head there. Assuming I had a pinched nerve and it was late on a Sunday, I thought it best to wait until the next day. I felt like I was stumbling around that house that evening and slept in the extra bedroom closest to the bathroom. Around 3:00am, I told Tim I thought it was time to go back to the ER, but first I would take a shower. No such luck – I could not get in the shower at all because I was having problems standing.
Tim took me to the ER and walked me to a wheelchair, and then after more tests and MRIs, I was admitted; at first to a regular room, but I was then moved to a step-down unit since I was paralyzed from my bra line down.
The next 36 hours were the most frightening. Working at MIT, with doctors, I made a call to one and received the best input possible. He spoke with the neurologist at the hospital and agreed it was one of two things, but treatment paths were different. I had to wait for an EMG before the correct path was chosen. I had no idea what that was, but as they came hourly to test my breathing, and as I felt tingling moving down my arms, it felt like things could not move fast enough.
Being in Boston means that you are in one of the best medical cities anywhere. And, even in smaller hospitals, there is excellent care. Thinking I was going in for a pinched nerve, we went to our local hospital, which is excellent in many ways and the care I got there was wonderful. However, I had to wait for testing until Tuesday afternoon when the specialist was available.
I can’t really explain the frame of mind I was put into by the situation, but I will try. I was paralyzed and could not sit up or move. They used a board to transport me between my bed and a traveling gurney, and off we went through the halls of the hospital wing into the doctor’s wing. This was very familiar to me from past medical appointments, including those with our children’s pediatrician. The exam rooms are small, and this one was no different. The turn into the doctor’s suite was like going into another dimension. On the left was a long working station with two people answering phones, to the right was the tiny exam room I was meant to go in and straight ahead looked like two bedrooms. (It ends up that the suite was shared with the sleep lab!) As the attendant went to present me to the doctor on the right, he looked at me and said, “You can’t get on the table here?” There was a tiny exam table across the room. A room that was filled with a computer cart with a computer that looked like it was from the 1980s, with a lot of wires hanging off.
After the doctor realized I was not going to walk into the room and get on the exam table, he told the gentleman pushing me to wheel me into the room head-first because the room was so small that only half of the gurney would fit in. While I was there, the ancient computer shut down and had to be rebooted, something I had not heard of for ages. Then the doctor, who was on my right side, asked his assistant, who was on my left side, to turn down the light. If I could have moved, I could have done this as the wall switch was only a foot away from me. As it turned out, the assistant had to crawl under the gurney! And the bizarreness continued. After completing the upper body electrical testing, he told his assistant to push me out and turn me around. She tried, and then the doctor called out to the staff answering phones, “Igor, come and move this.” They all forgot to note that the attendant had locked the bed – which I’m sure is according to protocol. I was the one to point this out and then proceeded to basically explain to them how to do a K-Turn in one of the bedrooms to get my bottom half back into the tiny exam room. After testing the bottom half, they called to get transport back up to my floor. The assistant hung up the phone with a huff and said, “can you believe it, they want me to use a computer to put in a request – we don’t use computers!” Instead they used a pager to get another assistant. He had no idea how to get me where I needed to go, and at one point I was left in a hallway as he went to get help. Finally, a nurse came along and brought us through a locked unit to an elevator which would get me where I belonged. As the elevator opened, there was my original attendant – he knew where to take me.
Results from the EMG meant I did not have Guillain-Barré syndrome, so by default treatment was started for transverse myelitis. By Tuesday evening, I was given IV steroids. After one day I could wiggle two toes on my left foot, after four days I could sit up (if I held on), and after five days they could transfer me to a wheelchair using a standing pivot device. That also got me into the shower – an amazing delight!
During the week in the hospital, our challenge was to keep up our humor and to test that of the residents and neurologists. What I was going through was not linked to a clear cause. Having worked with a research group for the past twelve years, we knew how to try and find out information. This was a nightly challenge for us and our relatives. My sister said it was leprosy – based on a good Catholic school education and memorizing the lives of the saints. And, for me, especially after the steroids kicked in, I had plenty of time to look up what may be going on. The team showed up each morning and I gave them my list. Tests continued and no clear cause was identified, and it was classified as Idiopathic Transverse Myelitis. When I spoke to my MIT connection, he said the “best outcome” may be a single episode, but you have to be comfortable with no conclusive reason and know that you cannot live with the stress you were under before – he was the first one to suggest that there would be a life change ahead.
Finishing up the IV treatment, I was transported next to Spaulding Rehabilitation Hospital in Charlestown, MA. Given a tour my first day there, Tim ran into an acquaintance from our kid’s years in school. He was recovering from a bicycle accident and was finishing his rehab that day. He told us – this is like Space camp and you should do everything they say. He was right. I was amazed when they showed up the next morning to take me to the gym. Physical therapy (PT), occupational therapy (OT), therapy of every kind was given and, even though I spent the holidays there, by the end of it, I was walking out! I was using a walker, but I could move in a very stilted fashion and that felt like a huge achievement!
I started outpatient PT the following week on a Tuesday but by Thursday I had marked weakness and was strongly advised to get back to the hospital. Our local hospital, and the neurologist there, did not know what more to do for me. Again, we reached out to my MIT connection and again he came to the rescue. He made arrangements to link me with the neurology team at Beth Israel Deaconess Medical Center (BIDMC), and off we went to another ER and admittance. Again, lots of tests, and the decision to rerun the IV steroids but this time with an oral taper to ensure that the acute phase was over. After two nights in the hospital and very little sleep, we convinced the team to allow me to do outpatient IV treatments. Having experienced two attacks, the fear of going off the steroids existed, but I finished treatment after twenty-three days and got back in the rhythm of outpatient PT two times a week.
So many things have changed in our lives. The house has been retrofitted with handrails and bars; a shower bench sits in the tub; a closet that used to hold sweaters is filled with medical supplies; fashionable clothes have been swapped out for loose fitting ones – I’m still hoping to find a magic fabric that doesn’t hurt; sneakers replace boots and heels; work is over and a social life has not started up again. It’s just too overwhelming and getting through the pain, exhaustion, and anxiety that each day brings with it takes all of my focus and energy.
We attended the 2019 Rare Neuroimmune Disorders Symposium (RNDS) to learn as much as we can about TM: How do you manage the many aspects that impact your life? How do you live with uncertainty about recurrence? What is the research community learning and what do they recommend? How do you maneuver through the insurance minefield? (Blue Cross Blue Shield recently cut off my PT after thirty-four sessions citing insufficient progress. Subsequently, two grievance appeals have been denied.)
Attending the 2019 Rare Neuroimmune Disorders Symposium (RNDS) was a worthwhile and enlightening experience for both me and Tim. Being new to this world, it was comforting to know that such an organization existed. The ability to meet others dealing with rare neuroimmune disorders, specialists at the forefront of the research, and people dedicated to making a difference gave us a sense of community and of hope, and for that we are grateful.