My name is Aleksandra. I have skimmed through this blog several times, and have read many stories of people who share the same story. On December 9th, 2015, I was diagnosed with Transverse Myelitis (TM), a diagnosis I have grown to fear and hate. TM hit me like a freight train, and that is not an exaggeration.
Before December 9th, I was an active, health conscious and optimistic18-year old girl. My feet were my primary source of transportation. I walked between 4-6 miles a day for school, work; everywhere. I felt quite invincible. Then, on the evening of December 9th, my fiancé and I decided to go out to town to spend some time with friends. We enjoyed our time at a local restaurant until I got up from our booth and felt a sharp, breath-taking pain between my shoulder blades. Assuming it was a very bad muscle pain from my workout earlier in the day, I tried to ignore it. Only when it started to radiate into my arms and torso to the point where I was slouching like a hunchback in order to relieve even the slightest degree of pain, did I express my concern.
I remember the fear and pain that I kept inside myself, and held a blank, mute expression on my face as I grabbed the pool stick to break for a game that we were playing with our friends. I lifted the stick and knelt down, and that’s when I realized I no longer had control over my left arm. I tried to bring it up, but it refused. My fiancé’s face expressed the greatest look of concern, and he insisted on taking me to the ER right away. Being the stubborn person I am, I dismissed it and continued to try and play. I couldn’t process what was happening to me and I was in denial. Was I having a stroke? Is my heart giving out on me? Did I get poisoned?
My thoughts were interrupted by the silence around the pool table, and blank expressions on everyone’s face who saw me. I had not noticed my other arm go limp, and my legs unable to support my weight anymore. It was time to go to the ER. My fiancé and his friend carried me to the car, and they were just as scared as I was. They had to remain calm, and think on their feet as they realized I had progressed within an hour to being paralyzed from the neck down.
By the time we arrived at the ER drop off zone, which was only 20 minutes, I could no longer move. I was transported by wheelchair from the car. Everything is a blur from that moment on while being admitted. I just knew that I was dying. And I couldn’t let go of my fiancé for a second, afraid that those were the last moments I would have with him. Although I was semi-responsive to the nurses who hovered over me, my mind was in a different place. I began to have flash backs of my life, all the lovely things I have experienced, all the people in my life, the things I have done, and the pleasure of spending my summer with a man who turned out to be my guardian angel. I had never known fear until that day. I was brought in and taken to a room minutes after arriving at the hospital. I knew that wasn’t a good sign. That meant that I was a critical case above all the people who were in that waiting room.
I was told to undress, but I couldn’t. I was told to give a urine sample, but I couldn’t. I collapsed in the bathroom, unable to press the help button to call the nurse who was standing outside the door. I yelled and yelled until she finally heard me. They brought me back to my room. All I remember is hearing a code called and I was taken away into another room. Poked with needles 15 times, I cried and begged them to stop. I was in so much pain but I still couldn’t move. I couldn’t wipe the tears off my face. I couldn’t hear or see anything around me. Everyone seemed so worried, so confused, and so perplexed. They didn’t know what to give me, what to do-nothing. Thankfully they did rule out a stroke, but they couldn’t figure out what could have caused any of this. I fell asleep and woke up in an ambulance in the morning. I was being transported to a different hospital and assigned four different doctors.
Two MRIs, two CT scans, and a lumbar puncture later, my neurologist came into the ICU room that I had been assigned and gave the diagnosis – Tentative Acute Transverse Myelitis. I had never heard the name in my life. All I remember is being angry when he said tentative. Did he understand my pain and fear? Did he understand that tentative is not what I wanted to hear? What is really wrong with me? You are a doctor. Help me, please! But I stayed mute. Tears just trickled down my face and a blank expression while he explained to my fiancé and me what it was, how they think it works, and the prognosis. He explained that no signs of infection were found, and that they didn’t know what had caused the autoimmune response.
I was given intravenous steroids and copious amounts of hydrocodone. The opioids did nothing but got me high enough to not care, and to fall asleep for 12+ hours. I was visited by friends and family, and my fiancé who stayed in the hospital with me 20 hours a day, sometimes even spending the night in the empty hospital bed next to me.
The week in the hospital felt like months. I couldn’t do anything on my own, even urinate or control my bowels. It was torture. I felt helpless. My depression grew stronger by the hour. It was the holidays, my favorite time of the year. I watched the holiday commercials on TV of gorgeous women, loving happy couples, and I began to envy anyone who was able to move their body and do simple things like go to the bathroom and walk around and decide when and where they want to go. I felt like no one appreciated just being able to stand or move their body. I wanted death. I couldn’t stand a life like this. It had barely been a week and I was already having suicidal thoughts. Was this going to be the rest of my life? Is this all I will ever know from here on out? All my goals and ambitions of getting a PhD and going to the top medical university in Los Angeles just withered away within days. I prayed that I would awaken from this dreaded slumber but geez, I couldn’t even pinch myself if I wanted, better yet, would I even feel it? The hilarity. Gallows humor kept me entertained.
Unable to tolerate being in the hospital anymore, I demanded to be discharged, and even bluffed to leave against medical advice. Finally, I was discharged the following Thursday, making it a week. All I remember is the horrific pain I felt every where in my body down to the bone, and trying my best not to puke my guts out. I made it home. I smelled like urine and my hair was globs of oil. But I was relieved to be in a bed, in a place I knew, around people I love. I felt a little more human.
To keep it short, the days and weeks following consisted of more depression, more embarrassing and helpless situations on my end, and yet trying to feel as normal as possible.
Slowly, I began to recover. First one finger at a time, one toe at a time, then holding a fork, picking up a cup of water, brushing my teeth, and putting on make-up. I started to regain hope in myself. I knew who I was, and I started remembering the strong and stubborn person that lived within, who wouldn’t let anything stop her from achieving her goal. I was feeling myself again. I felt hopeful. I wouldn’t let this devil of an illness change who I am, and break me. I fought the sickness and I win more every day.
I pray for everyone who suffers with TM, and I genuinely hope that the odds will be in your favor.
Thank you for reading my story.
My name is Darren Clayton. I am 31 years old and live in Stillwater, Oklahoma. I would like to tell my story about being diagnosed with Acute Disseminated Encephalomyelitis.
On the evening of November 2, 2014, I was having horrible pain in my lower back and felt like there were ants crawling on the inside of my skin from my waist to my neck. I drove to the emergency room and while there, they started doing lab work and running tests to see what might be wrong. Before I go any further I will say that I had been sick with flu-like symptoms for 2-3 weeks prior to this. I had a fecal test and was aware that I had gotten Campylobacter Jejuni and Cryptosporidium and was given antibiotics. I had felt like I was getting somewhat better when this hit me all of a sudden.
While waiting for results from the lab work at the emergency room, a nurse came in and asked me to give a urine sample. As hard as I tried, I could not urinate. While waiting in the emergency room, I lost all feeling from my waist down. The nurse came back in every few minutes and started scolding me about not being able to urinate, although there was no way I could.
The doctor and nurse advised me that I probably just had a slipped disk and told me to go home and go see my family doctor the next day. I called my wife to come pick me up and the nurse put me in a wheelchair in the lobby while I waited for my wife. I made it home and literally crawled from the vehicle inside the house and up the stairs to my bedroom. I laid there for about 30 minutes and had to pee so bad that I felt like I was going to explode. After about 45 minutes my wife called the ER and spoke with the nurse who had ‘taken care’ of me. The nurse asked me if I had taken the medicine that they had given me for anxiety and told me that I just needed to calm down. After my wife had spoken with her and got pretty agitated, I waited a few more minutes to see if I could pee and realized I couldn’t. With so much pain in my back and feeling like my bladder was going to explode, my wife called 911 and had me transported back to the ER where they used a catheter to empty my bladder which was 4 times as full as normal.
They then transported me to a hospital in Oklahoma City, OK where I was met by a group of doctors, nurses and neurologists. They immediately did a spinal tap and the next day they told me that I had Transverse Myelitis. They first thought that I had Guillain-Barré Syndrome and started treating me for that but after doing an MRI they had concluded that I had Acute Disseminated Encephalomyelitis. They moved me to ICU and I was told they would keep me there until they were sure that the paralysis would not move up above my lungs and they would have to put me on a ventilator. While in the ICU, a team of neurologists came in and were discussing my condition, as they said that it was so rare and had never seen a case like it, and were trying to learn from it and figure out what could be done. After about 5 days, I was finally able to move my left big toe. Within two days they had moved me to a regular room and started taking the proper steps to admit me into Jim Thorpe Rehabilitation Hospital (to whom I give a lot of credit to why I am walking today). I was moved there and started inpatient rehabilitation. I had neurologists and doctors coming in explaining what this disease was, the chances of coming back from it and how difficult it would be. I would say that this was a miserable time and I was down in the dumps, but that came later. I started out doing therapy twice a day, just trying to learn to walk again. I had lost over 20 pounds and was so weak it was pitiful. A doctor had come in and told me that I may never walk again and told me that my chances of walking again were about 33%. I then said that there was no way I was going to be in a wheelchair for the rest of my life. At the time my son was 6 years old. I couldn’t imagine not being able to ride bikes with him, play with him outside and live a life that was not somewhat normal. I prayed to God that he would help me walk again. “If nothing else comes back, even if I have to use a catheter or have other life changing problems, I HAVE to walk again” was my prayer.
I was so determined and motivated to walk that I worked so hard every time I had therapy and between therapy while lying in the hospital bed I was doing something to try and strengthen my legs. At that rehab center I was assigned a therapist who worked with me every day and gave me motivation and kept my spirits up when they seemed to get down. They had a type of robot-machine they put me in which helped train my muscles to walk normal again. I will always remember the first time that I was able to walk about 200 feet around a room without any help and it was one of the happiest times of my life. After about 2 weeks in rehab (almost a month after my initial paralysis), I was released and was able to go home and start outpatient rehab. As soon as I got home I got in touch with a personal trainer that I had used before and started back on full body workouts and worked extremely hard to gain muscle back and get back to somewhat close to how I was before. While being sick, I had lost over 20 pounds and lost about 75% of my muscle mass. (Before I got sick I was bench-pressing almost 300 pounds and when I got out of rehab I could barely bench 85 pounds). I continued to work out daily.
Then came the time when depression kicked in and I felt like I was going crazy. While in the hospital they had put me on medicines for depression along with all the pain pills and other drugs to help me recover. One night I was so stressed and feeling hopeless that I flushed all of my pills down the toilet (pain pills, depression meds, anxiety meds). I was also told (and experienced) that I might suffer some ED (erectile dysfunction) from this which I have to come extent.
To conclude, I want to say that this happening to me was one of the best things that has ever happened to me. I was always a great father to my son but I believe that this brought me back down to earth, made me realize what was important in my life, made me see who was there for me and who would stick by me, who my real friends are and how much I could really handle.
In all of this I know I couldn’t have done it without my wife, God and the support and prayers of my loved ones and especially the faith I had and have in God. Every day I struggle with things from this horrible disease but I know that I can overcome all of these things with faith in God and support from my wife and family. If anyone encountering this has any questions or needs any support don’t hesitate to contact me at my email or phone number.
God Bless you all,
Darren L Clayton
We are less than month away from the 2016 Regional Rare Neuro-Immune Disorders Symposium. This conference is open to all individuals diagnosed with AFM, TM, NMOSD, ON or ADEM, their families and caregivers. Medical professionals interested in these diseases are also welcome to attend.
- Acquire an understanding of rare neuro-immune disorders (TM, NMOSD, AFM, ADEM and ON) and how they relate to each other
- Learn about the latest therapies and strategies to manage the symptoms associated with these chronic rare neuro-immune disorders, including clinical studies and future treatment strategies
Please join us!
University of Colorado Hospital
Anschutz Inpatient Pavilion 2
Bruce Schroffel Conference Center
12605 E 16th Avenue
Aurora, CO 80045
Registration Fee: $15
Do you have questions about school-related issues for students with disabilities as you plan ahead for the new school year? What services are available for students with disabilities in K-12 or even in college? How can one manage the neuropsychological manifestations of TM, NMO and ADEM and succeed in school? What are some of the federal laws and state laws that one should be aware of? Do you have questions for our experts?
Join The TMA’s “Ask the Expert” Podcast Series
Back-to-School Preparation for Students with Demyelinating Diseases: Legal and Neuropsychological Perspectives
Lana Harder, PhD, ABPP | University of Texas Southwestern | Children’s Medical Center Dallas
Susan Schoppa, JD | Medical-Legal Partnership for Children | Dallas Legal Aid of NorthWest Texas | University of Texas Southwestern
On July 12, 2016 at 12 pm Eastern Time
An education and advocacy conference for families, caregivers and individuals diagnosed with Transverse Myelitis (including the subtype Acute Flaccid Myelitis), Neuromyelitis Optica Spectrum Disorder, Optic Neuritis and Acute Disseminated Encephalomyelitis
This conference hosted by The Transverse Myelitis Association (TMA) and The University of Colorado, Denver is dedicated to the exchange of information regarding diagnosis, research and treatment strategies and to providing an opportunity to bring together the community of individuals diagnosed with these rare neuro-immune diseases, families, caregivers and the medical professionals who have interest and are specializing in these disorders.
The symposium will begin at 8:00 am MDT on Saturday, August 13th 2016 and will be held at
University of Colorado Hospital
Anschutz Inpatient Pavilion 2
Bruce Schroffel Conference Center
12605 E 16th Avenue
Aurora, CO 80045
For more information about the symposium and to register, please click here.
I’ll never forget the morning of June 19, 2013 when I took a pregnancy test that was positive! Just to be sure, I took two more! All positive. That afternoon I picked my husband, Mitch, up from the train station with a gift for him revealing we were expecting! We were both ecstatic for the new journey we were about to embark on.
We prepared like most first-time parents do; setting up the nursery, reading books on birth, schedules, sleep and more! I completed the genetic screening, glucose test, anatomy/organ development ultrasound which all came back normal. Mitch and I felt as ready as we were ever going to be as first-time parents. What we never prepared for was what happened on October 3, 2014.
Our beautiful baby boy, Noah, arrived March 2014. Ten fingers, ten toes, perfect from head to toe! We survived the first few months of sleepless nights and soon enjoyed a daily rhythm. We enjoyed getting into the groove of becoming a family of three. September rolled around and sweeping the news were stories about enterovirus D68 (EV-D68). Noah had come down with quite a few colds that month. With a combination of EV-D68 in the news and Noah’s colds, we became frequent flyers in our pediatrician’s office. Noah presented with a very typical upper respiratory infection and because he wasn’t wheezing, there didn’t seem any reason to be alarmed.
It was a sunny Friday morning on October 3, 2014. It felt like any other day, why shouldn’t it be? I put what I thought was a healthy baby to bed the night before. We woke up just before 8 am and I got Noah out of his crib for his morning feeding. Like every morning, I brought him in to my bed to nurse him. After eating, I went to sit him up and he fell backwards. Puzzled, I tried again, but again he fell backwards. My initial thought was he was full and sleepy but I quickly realized, as I looked him over, he wasn’t moving his legs, feet or toes. Everything from the waist down was torpid. Immediately, we placed a call to our pediatrician who directed us to go to the hospital. The Beverly Hospital emergency department was alerted that we were on our way and they didn’t waste any time examining Noah. Within 15 minutes of our arrival, an ambulance was waiting to take Noah to Boston Children’s Hospital (BCH). To the emergency physician on duty that day, thank you! Thank you for not wasting our time and going with your gut and sending us right to Boston. She knew upon arrival that Noah needed more specialized care and this was a time sensitive medical emergency. I remember her apologizing to me for not knowing what was wrong with him as we were preparing to depart for BCH. I know in my heart without her impulsive decision to move us as fast as she did, Noah would not be where he is today.
When we arrived at Boston Children’s Hospital, Noah was examined and his blood was drawn. In the thick of the EV-D68 outbreak, the medical community was on high alert and knew they were racing against the clock to make a diagnosis and start treatment. EV-D68, as you may know, can mask itself as many other illnesses. It’s crucial for someone with this virus to receive treatment as fast as possible. A spinal tap was done at bedside and soon Noah was sedated for an MRI. Once these tests were completed, it was time to wait for the results. Waiting, waiting, waiting…waiting to get answers. Waiting to hear what our future holds. Waiting to see if the day we just had would ever make sense. Waiting to hear if this paralysis would be reversible. We waited.
While we were waiting, we cuddled our baby boy. We held him ever so tightly so he felt comforted in our arms and we were comforted by him. As parents we felt helpless. How could we have not protected him from whatever this is? Every decision, moment, event that happened went through my head. What could possibly cause this? How did we end up here? Was it cancer? EV-D68? Guillain-Barre Syndrome (GBS)? Can it be fixed? We just had to wait for answers.
We had made it through the day in survival mode. My aunt, who was a nurse, was with us, being a third set of ears for us and helping us navigate the nightmare that was unfolding before us. The emergency room physician came in to inform us the possible diagnoses were GBS or a type of myelitis radiculitis caused by EV-D68. A nose swab, stool culture and spinal tap would be sent out for testing to see if EV-D68 was present. These two possibilities were overwhelming and terrifying. What do you hope for? Both were life changing and only time would tell as far as a prognosis. We were told the initial treatment for both illnesses had the same protocol and they would start immediately.
After a 10-hour day in the emergency department, we were moved up to the inpatient neurology floor where we were told our stay might last a few months. How did my six-month old baby who was meeting all his milestones early all of a sudden become paralyzed over night? How did we get here?
We got settled into our room that overlooked the city. Outside life was happening and inside our hospital room (it felt like) time stood still. It was as if we weren’t a part of the world that was going on around us anymore. We were in a nightmare and couldn’t get out. Mitch and I could only fix our eyes on our faith – we clung to it with every fiber of our being.
The overnight physician arrived shortly after we got settled into our room. She explained to us the two types of treatment that would be started. Immunoglobulin therapy (IVIg) and intravenous steroids would be given simultaneously throughout the night. Shortly after the first round of IVIg was started we found out Noah was allergic and it had to be discontinued. He spiked high fevers throughout the night and was unable to continue the treatment because the dose he was receiving was already being given at a very slow pace. Unable to tolerate the IVIg and spiking such high temperatures, the physician came back in to inform us they would monitor him closely, but if he got worse or needed more assistance they would be moving him up to the ICU. Every 15 minutes his vitals were taken and we watched his monitors closely. Night turned to day as the sun came up over the city and the world outside kept on moving. In our world, time continued to stand still.
The start of the second day – a new type of IVIg was administered and thankfully there was no allergic reaction. Noah was able to tolerate the new drug and dosage at an average infusion rate. We met with the inpatient attending and resident who took over Noah’s case while we were there. The radiologist who reviewed Noah’s MRI the previous day wanted another MRI to confirm a possible diagnosis. The second MRI concluded Noah had Acute Flaccid Myelitis (AFM), a subtype of transverse myelitis.
Noah would finish the protocol for the IVIg and continue steroids for another few weeks. When the doctors told us of Noah’s diagnosis, they said since Noah’s paralysis was sudden and medical intervention happened within 24 hours of onset, they caught this early. In the midst of a parent’s worst nightmare, these words were anything but comforting. No one could tell us what Noah’s future would look like and if the paralysis would be permanent, but we were to remain hopeful. Only with time would we truly know the aftermath of AFM. We were told the United States was in the thick of the outbreak and it would be months or longer before we knew how other children recovered from AFM.
Overnight our nurse noticed Noah’s mouth started to slightly droop on one side and the next morning they decided they would place a nasogastric tube (NG-Tube) to avoid pulmonary aspiration. During our first few days, it felt like we continued on a downward spiral. Pretty soon though things started to turn around. We started to see gradual improvement. The turnaround seemed pretty quick for an AFM patient. Noah’s mouth, neck and arms regained their mobility and control. As for the waist down, we watched and waited for any signs of movement.
As the week went on, Noah’s upper body continued to regain control. We constantly watched his lower body for any signs of movement. The NG-tube was removed by the end of the week. Since his upper body was improving daily and the NG-tube was out, they decided that he could go home. As for prognosis, no one knew. Everyone hoped with time healing would occur. After initial treatment of IVIg and steroids, the next step was physical therapy. Typically, an AFM patient would be transferred to a rehab facility but because Noah was only 7 months old (Noah turned 7 months old during our stay), everyone felt it was best to discharge him home and proceed with outpatient physical therapy.
After an eight-day hospital stay, it was time to go home. We couldn’t believe it especially since we had prepared ourselves for a long-term stay. We were more nervous bringing him home than the day he was born. Our lives changed overnight and now it was time to adjust to a new normal.
Once home, it was time to focus on Noah’s recovery. We started outpatient physical therapy at a facility near our home within the first week or two. Slowly and ever so slightly we saw movement coming back. A sign of hope! After being home a little over a month, we were enrolled with the Northeast Arc – Cape Ann early intervention, a program that provides services to children ages three and under with disabilities and developmental delays. We discontinued our outpatient therapy, because in-home therapy would be provided through the new service. Through the Northeast Arc we were assigned a physical therapist, Dr. Jenna Elie (PT, DPT) who also is our case manager. She initially saw Noah once a week, but quickly started coming twice a week and added a developmental specialist for supplemental physical therapy because of the progress and improvement she saw in Noah every week. Three months into our three sessions a week therapy regiment, Noah was accepted into the aqua therapy program, bringing our weekly sessions up to four.
On top of our weekly therapy sessions, Mitch and I were taught how to work with Noah throughout the day to incorporate therapeutic play in Noah’s daily activities. Each week we saw progress. After consulting with a leading physician in AFM who supported and encouraged an intensive physical therapy regiment, Dr. Elie was quick to bring on board an occupational therapist for more supplemental physical therapy. In Noah’s case, our weekly therapy sessions were continuing to make Noah stronger. Hippotherapy and music therapy were also brought on board in early 2016. Dr. Elie said we have to, “Think outside the box in the treatment plan. After all these children are 1 in 2.7 million, they are unique and their therapy services should be as well”. She couldn’t be more right! We collaborated together advocating for many types of therapy services, which have proven in Noah’s case to be just what he needed in his recovery. Noah is now a year and half post onset and walks with a posterior gait trainer! Noah’s recovery team consists of neurologists, urologist, physiatrist, physical therapists, developmental specialist, occupational therapist, hippo therapist, orthotist, orthopedist, pediatrician, and music therapist. We couldn’t be more grateful to our dedicated team and to Dr. Jenna Elie who helps us advocate and coordinate Noah’s care.
The Transverse Myelitis Association is seeking to hire a part-time Administrative Associate. The Administrative Associate will be vital in providing day-to-day support for the team, and will contribute meaningfully to the delivery of our mission.
If you are interested in the position, we encourage you to apply. Please click here to learn more about the position and apply! Please spread the word!
A recently published study looked at pregnancy outcomes in individuals with aquaporin-4-positive (AQP4) neuromyelitis optica spectrum disorder (NMOSD). Studying pregnancy in NMOSD is important because NMOSD is more common in women and often occurs during childbearing years.
60 women with a history of at least one pregnancy who had AQP4-positive NMOSD from three countries (UK, Portugal, and Japan) were enrolled in the study. The researchers looked at pregnancy outcomes, including miscarriage and preeclampsia. Miscarriage was defined as a spontaneous loss of pregnancy during the first 24 weeks of pregnancy. Preeclampsia occurs when there is high blood pressure in pregnancy and protein in urine.
NMOSD disease onset occurred at an average age of 46.4 years. Onset was with optic neuritis in 42% of the women, transverse myelitis in 38% of the women, and brain lesions in 18% of the women.
The study included data from 85 pregnancies from 40 women in the miscarriage part of the study. 71 pregnancies occurred before NMOSD onset and 14 pregnancies occurred after NMOSD onset. Eleven pregnancies in total (12.9%) in 6 women ended in miscarriage, which is not different from the miscarriage rate in the general population.
In this study, the miscarriage rate was found to be higher after the onset of NMOSD (42.9%) than before NMOSD onset (7.04%). There was also an increased odds of miscarriage in pregnancies after or in the three years before the onset of NMOSD, even when controlling for older maternal age and miscarriage in the most recent pregnancy. The miscarriage rate also differed by race: the miscarriage rate after NMOSD onset was 60% in Caucasian women and 0% in Afro-Caribbean women. The NMOSD relapse rate in the preconception and intrapregnancy period was higher in pregnancies that ended in miscarriage compared with pregnancies that did not end in miscarriage after NMOSD onset. These women were also more likely to be receiving treatment for NMOSD, but the miscarriages were not from the medication. These women had more attacks which made them more likely to be receiving treatment.
The study included data from 113 pregnancies from 57 women in the preeclampsia part of the study. 13 cases (11.5%) of preeclampsia occurred. NMOSD onset was not a risk factor for preeclampsia, although the rate of preeclampsia was higher in the study participants than in the overall population. In particular, the study reported that the odds of preeclampsia were greater in women who had multiple other autoimmune conditions or who had had a miscarriage in their most recent pregnancy.
Annualized relapse rates (ARR) were also calculated. Pregnancies that didn’t end in miscarriage were associated with a significantly increased average ARR in the first 3 months after birth compared with the average ARR up to 9 months before conception.
The authors state that it is possible that AQP4 can contribute to miscarriage risk because of the results of this study and other studies done on animals, but they state that further studies are needed in this population. It also appears as though some women were prone to miscarriage in this study. Of note, in this study, the number of women TREATED before and during pregnancy were too small to determine if the rates of miscarriage could be lowered by using treatment. As a result, the data set in this study is too small to base decisions on, but should be taken into account when consulting with a neurologist about pregnancy planning.
Nour MM, Nakashima I, Coutinho E et al. Pregnancy outcomes in aquaporin-4-positive neuromyelitis optica spectrum disorder. Neurology. 2015;86(1):79-87.
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