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I Win More Everyday

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.

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My Story with ADEM

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
256-529-1419
darrenlclayton@yahoo.com

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Our Acute Flaccid Myelitis Story

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.

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My Personal Road Map – A Letter to My Sister

Dear Sister,

Imagine a road trip from South Florida to New York. If I were to take I-95 and drive straight through with another driver to help with the driving, I could be there in 24 hours. I’ve done this drive several times and I know this from personal experience.

Now having transverse myelitis, I can still make the drive to New York, but instead of taking only 24 hours, it will now could take me 8 –10 weeks, depending on how I physically feel. If I sit in one position too long, I get very, very sore, so I need to stop every 30 minutes, and get out and stretch my legs. Because of the damage in my spinal cord causing mixed pain signals from my legs, I can barely feel the gas and brake pedals so I drive a lot slower and am overly cautious. I can only drive 3 – 4 hours a day, because of the fatigue.  By the time I’ve stopped at a motel and prepared myself for bed, I feel like I’ve just driven 500 miles without stopping. By 3 PM I am totally exhausted and begin looking for a motel, but every one I pass blinks, “No Vacancies”.  Then by pure accident from the corner of my eye, down a lonely side road, I see a small “roach” motel in a tiny town that has a population of 50 people. I am very grateful for this roach motel! It doesn’t matter that the carpeting is dirty as I can’t feel my feet anyway.  But just in case, I’ll give them a good scrubbing before I climb into bed. All I care about is taking care of my personal needs and going to sleep. I also wake up every two hours to catheterize myself because I HATE BEING WET. While on the road, I must stop a lot to use the rest room.  Even with grown up pull ups, pads and being able to self-catheterize, I still need to stop every hour. Once I stop, everything I do is done in very “S——-L——-O——-W” motion. For the record, everything I do since I came down with transverse myelitis is done in very “S——-L——-O——-W” motion.

I also no longer am able to drive on I-95. The entire trip from South Florida to New York must be driven on back roads and I can only drive between the hours of 11 AM and 3 PM. Because of the extreme fatigue, there will be times I need to pull over into a rest area and take a quick cat nap so I can continue on my drive. If it’s raining, or bad weather is expected, I will remain at the motel because I can’t take a chance slipping and falling while walking to or getting out of the car. I also can only make the drive during the fall season, because I can’t drive on snow. Technically I can drive on snow, but if I slip and fall on the snow in the cold, I might not be able to get back up on my own and freezing to death is not part of my game plan. I must stop to eat lunch and pray that it’s not too long a walk from the handicapped parking spot to the restaurant. I will eventually get to New York; I just can’t do it the way I used to.

I’m still the same person that you have always loved, I just have to do things differently, and don’t worry, transverse myelitis is NOT contagious. Don’t treat me any differently than before, and if I need your help, I’ll ask. I’m not a china doll and I don’t break when I fall. I do stumble, I do fall, but not as much if I walk and do everything a lot slower. Oh and by the way, since I left in the fall to visit with you, you’re now more or less stuck with me until spring after the snow thaws. Thank God you’re my sister, no one else would understand.

With Love,
Carolee

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Dr. Sara Qureshi Joins Billings Clinic in Montana!

In her own words…

My introduction to neuroimmunology and the challenges that inevitably accompany the diagnosis of chronic neurological diseases and rare disorders came with my sister’s diagnosis of multiple sclerosis in my home country of Pakistan. Since multiple sclerosis is rare in Pakistan, our initial and subsequent experiences (as I learned much later) had a striking resemblance to those of patients and families with rare neuro-immunological disorders here in the US. We soon learned the importance of educating ourselves using the right resources and advocating for ourselves as we navigated the health care system and life in general. Inspired by my sister’s bravery and hoping to safeguard her interests, I set out on my journey to train as a neurologist and subsequently as a neuro-immunologist in the US. This was over eight years ago and since then, in addition to my sister, I have been inspired by countless patients with both MS and rare neuro-immunological disorders.

Today, at the conclusion of my training in neuroimmunology at University of Texas Southwestern in Dallas and as I embark on a career as a neuro-immunologist at Billings Clinic in Montana, I am the product of my experiences as a family member and part of a health care team providing care to patients with neuro-immunological disorders. Over the years, I have come to believe that our goal as a health care team (which should include family members) is not just to ensure good health care for our patients but ultimately to assist them in leading fulfilling lives in spite of all the challenges that come with these diagnoses. This requires educational resources with the right information about conditions, support groups, forums connecting patients and families to each other, access to latest research etc., all critical elements as we attempt to achieve our goals for patients. My introduction to The Transverse Myelitis Association came from watching Dr. Greenberg’s team working relentlessly for The TMA during my neuroimmunology fellowship. However, my real education about the impact that TMA has on patients with rare neuro-immunological disorders came from hearing their stories firsthand in clinic. As they recounted their initial experiences, it became apparent to me that more awareness is needed in our health care system about these conditions along with neurologists with the expertise to care for these patients. Another important lesson during my training was the importance of having the courage to embrace and manage patients with unclear diagnoses (not uncommon in rare disorders) and to solicit opinions from other experts to provide the best possible care for them. Given that these conditions are rare, it is also critical to connect individuals working in this field to facilitate communication between them in order to expand knowledge and move research forward. TMA is a huge resource for patients, their families and health care teams as they strive to improve care and advance research in this discipline.

Having come full circle now, I can see how my own view of the field of neuroimmunology has evolved immensely over time. Almost a decade ago, as I stood at the crossroads and made the decision to train in neuroimmunology, I was discouraged by well-meaning individuals in healthcare from going into a specialty with ‘so little hope’. Today, I can say with much conviction that nothing could be further from the truth! Even with existing resources, we can (sometimes after much persistence) almost always make things better and even though much remains to be accomplished, the future looks very promising! I feel privileged to be part of the world of neuroimmunology in these exciting times and honored to have the opportunity to work with The TMA in extending its impact to more patients and to build on the hard work of those before me.

Join the TMA’s ASAP Challenge, a matching fundraising campaign made possible through the generosity of The Madison Charitable Foundation. Physician education directly impacts quality of life. The ASAP Challenge supports the training of clinician-scientists like Dr. Qureshi.  You can make a difference by improving quality of patient care and accelerating critical research.

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I have a new motto: Failure is an Option. Trying is Not.

What this means is that I will sometimes not make it; I cannot do everything.  I’m a hemi, for crying out loud, a recent one at that, and sixty years old.  Also, I want to be human.  Over the years I never could always reach every goal, and I don’t want to lose that option, that part of my life, because I feel I have to prove something, to anybody else, or to me.  I prefer being human, being fallible.  Failure sure as hell is an option.

But trying is not.  I have to move ahead.  This is a new one for me; I would not have touted this when I first got home from rehab, scared and crying.  But I’m stronger now, in so many ways, and for so many reasons.

Also, this doesn’t mean I plan to do anything goofy.  As in, responding when someone taunts, “Bob, you should try….;” with something bizarre and risky at the end of the sentence.  My Bronx mother didn’t raise me to be an idiot; as Mr. Callahan said, “A man has to know his limitations.”

But if it’s practical, safe, and something that will make me better or something that I like, I’ll step up to the plate.  Carefully, at my pace, but I will get there.

Thus, I am not a supercrip, and not trying to be one.  I am no hero.  When Allen Rucker spoke to my class, he expressed the same modesty; I know what he means.  We have both seen folks overcome much more painful and debilitating disabilities, with more grace, more courage, and more talent than we could ever muster.  It is kind of like war heroes who don’t acknowledge their valor; they were on the battlefield, and saw the real heroes in action, who never came back to receive their medals.

Instead, I’m simply someone trying to live a normal life once again, being productive, enjoying recreation, making life’s decisions for myself.  That’s a reasonable enough goal, and one that I know I can achieve.

150pxRobert A. Slayton grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith.  In 2008 he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years.  These pieces are excerpts from a memoir of the disability experience he is working on.

Neuro-immune disorders like transverse myelitis are rare; more than 50% of people with transverse myelitis are initially misdiagnosed. Join the TMA’s ASAP Challenge, a matching fundraising campaign made possible through the generosity of The Madison Charitable Foundation. The ASAP Challenge supports the training of clinician-scientists. Help us create a future of hope for people with these rare disorders.

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2015: Our Year in Review

Dear TMA Family, 

2015 was another incredibly productive year. We offered many different programs and opportunities to accelerate education, research and awareness of rare neuro-immune disorders. We are entirely indebted and grateful for all that you, your families and friends have done to make this happen.


The TMA Board has made the James T. Lubin Fellowship a funding priority. Fellows are trained to provide clinical care to address both acute and long-term effects of these disorders. These rare neuro-immune disorders can affect anyone at any time. In the early stages, time is crucial and early recognition can make the difference in long term outcomes. Our first graduate, Dr. Allen DeSena, established his practice at the University of Cincinnati, and our second fellow, Dr. Michael Sweeney began his training at the University of Utah. Through the generosity of  The Madison Charitable Foundation, we are looking forward to funding not one, but two new Fellows in 2016.  Please join our ASAP Dollar-4-Dollar Challenge.

2015 ANNUAL UPDATE

People seek and find us at a most critical time in their lives. Receiving a diagnosis of acute disseminated encephalomyelitis, optic neuritis, neuromyelitis optica spectrum disorder or transverse myelitis begins a journey filled with tragedy, loss, pain and suffering. The TMA offers a pathway of  hope. We provide emotional support to those who feel isolated and alone in their experience with a rare disorder. We provide guidance to those seeking acute and long term medical care. We provide critical resources to the medical community, including medical training and research opportunities. With your help we can continue to raise awareness and train more clinicians in the diagnosis and treatment of these devastating disorders.

We appreciate all that you do for our cause and for your cause and look forward to your continued support.

Wishing you a Happy Thanksgiving,

Chitra & Sandy

Support research to understand more about rare neuro-immune disorders! Join the TMA’s ASAP Challenge, a matching fundraising campaign made possible through the generosity of The Madison Charitable Foundation. The ASAP Challenge supports the training of clinician-scientists.  You can make a difference by improving quality of patient care and accelerating critical research.

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Learning to Accept

My name is Lucy and I am 22. I was diagnosed with TM in August 2013, a few days before I turned 20. My story started at least 9 months before I received an actual diagnosis, and now I am slowly learning to accept and live with this condition.

It was at least 9 months from the start of my symptoms before I received a diagnosis. At first I noticed that I was getting tired and worn out more quickly and I had to urinate a lot more frequently, and when washing up afterwards, my hands were really painful in the palm like they were burning or being ripped open by glass. At first, I just thought it was the soap that I was using. I then noticed that while going to the gym and using the exercise bike my right foot felt like pins and needles all over it all the way up to my ankle, which I initially thought was because my trainer was too tight. The pins and needles sensation progressed over a period of a few weeks up to my knee but after a few minutes it would ease off. I used to swim 3 times a week as well for about an hour until I noticed that I would experience really bad neck pain on the left hand side almost in line with my shoulder, which I had never had before so then I started easing off the amount of gym/swimming I was doing, as I attributed it to overdoing workouts.

One day a few weeks later I had just gotten out of the bathtub and put my underwear on, leaned against the sink to brush my teeth and felt pain from my hip on the left side downwards. It really hurt to touch the cold enamel, and not long after that I had pins and needles constantly in my left foot including the sole of my foot and toes all the way up to my hip which then progressed to both sides over the next couple of weeks. At that point I finally decided to go to the doctor’s office, where I was prescribed tablets for inflammation and a muscle relaxant but I was never told what the problem could be. After taking the course of tablets the pain only worsened, the pins and needles so bad that anything touching the bottom half of me was the worst pain I had ever felt, and walking was a nightmare, from the waist down I was very sensitive to temperatures. I was numb and I felt as though my legs were like ice on the inside but to touch them they were a normal temperature, and the burning in my hands was really bad, and I began to get pins and needles in my head as well as my left shoulder blade.

I went back to the doctor and explained all this to him. I was given a blood test and was then told I was vitamin D deficient. I was instructed to buy a supplement which I did, but nothing changed and it only got worse. My hands were starting to lose feeling and became sensitive to temperatures, I couldn’t grip things properly and they started to spasm when I held a pen or something small. I went back again to the doctor’s, office and again I explained all of this to them. I was then referred to a neurologist.

When my appointment date came for the neurologist I was close to tears and frustrated that I had gotten that bad and no one was listening to me or wanting to help me. I was so tired and drained all the time, my entire body had pins and needles, spasms, burning, and by that point I had also begun to have extreme banding in my torso and extreme dizziness, muscle weakness/lead-like feeling in my legs, they were just so heavy and weak. I had no feeling in most of my body but anything hot or cold hurt me so badly it felt like my skin was being ripped apart. During my appointment the neuro did a few tests with his pen on me to test my sensation and tested my reflexes, then ordered a MRI.

Once I had the MRI and I went back for the results I was told I had a touch of swelling high up in my neck which is called myelitis. I was prescribed steroids and then sent home so I was left to find out on my own what TM is, how to manage with it and if there was a cure. Six months after my first doctor’s appointment I finally had a diagnosis but it didn’t make me feel any better. After the high dosage of oral steroids, the doctor prescribed another lot over a longer period of time as the first dosage hadn’t done anything, and the second lot didn’t work either.  I had to go back to the neuro and was prescribed over time a number of things to help manage the nerve pain, none of which helped me. They just increased the fatigue, dizziness or urination even more. I had a number of electrical tests in my brain and feet to check responses as well as 2 sets of MRI’s and an immunology blood test which all came back as satisfactory. Over time the pins and needles settled down but everything else was still very much there periodically though out the day.

During one of my many appointments I mentioned the dizziness and I was told by my neuro “It seems like every time you come here you have a problem” which made me feel like rubbish. I was also scheduled to have a lumbar puncture to test my spinal fluid to see what was causing the dizziness. All of this was a year ago now, so after 3 different appointments, one under x-ray and 10 attempts at the lumbar puncture, it caused me too much pain to have done so since then I have just been left alone.

I struggle everyday with one thing or another to do with TM and some new symptoms have appeared, such as loss of memory & concentration, not focusing properly especially on words. I tend to stumble over words or sentences or not understand what certain words mean or say, I have balance problems, on and off ear trouble, nerve pain, problems swallowing which causes me to choke so I don’t have much of an appetite and I don’t drink much. I don’t go out anymore on my own or with my friends because I struggle to focus properly on what’s going on around me which makes my dizziness worse.

I have learned to manage some of my symptoms during daily life by not doing too much in one day; otherwise I suffer really badly for the next 5 or 6 days with tiredness and lead like legs. I rest when my body tells me to, and I always make sure I always have a few sanitary pads just in case I can’t get to the toilet on time. It has been a little over 2 years since my diagnosis and I have learned a lot about the condition from things I have read on the internet and with help from the TM society on Facebook. I have come to terms with the fact that by now because of the time scale I will never make a full recovery from my attack, and I will always have these symptoms to a certain degree, but I am so grateful I wasn’t one of the unluckier sufferers that have been paralyzed with this illness. I have held down a full time job through the whole process and I have very supportive friends, family and partner who have been there for me from the beginning of my attack.

Neuro-immune disorders like transverse myelitis are rare; more than 50% of people with transverse myelitis are initially misdiagnosed. Join the TMA’s ASAP Challenge, a matching fundraising campaign made possible through the generosity of The Madison Charitable Foundation. The ASAP Challenge supports the training of clinician-scientists.  You can make a difference by improving quality of patient care and accelerating critical research.

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My Journey From the Wheelchair to Using my Legs Again

By Noshaba Malik, 21, Pakistan

It was a beautiful morning on July 12, 2010. I was in 11th grade walking with my friend down our college corridor when suddenly I felt a severe pain in my back. The pain was dreadful. I went to the college restroom and took Panadol (paracetamol) and rested for an hour. After an hour, I tried to stand up but my lower limbs were unresponsive. I was taken to the hospital and diagnosed with Transverse Myelitis. The doctor gave me steroids as an initial treatment.

I was paralyzed from the belly down and also had numbness. I started walking within 2 months of my diagnosis because of the medication I was given, physiotherapy, and great care by my family. I can still remember what it felt like to stand on my feet for the first time after paralysis. It was like being a baby again, learning how to walk, how to take steps. I started going to college and continued my studies but I continue to have some problems from TM. I can’t walk fast, I can’t run, and I also have problems controlling my bladder. I am still taking medication, but the numbness in my lower limbs and my urinary incontinence are not getting better.

I passed my 12th grade with flying colours and joined the field of Physiotherapy, and I am pursuing a Doctorate in Physical Therapy. I take my limping leg and my uncontrolled bladder with me. I go out every day, I go to college, visit my friends, and go shopping. I feel that when I pass people they look at me and then they whisper to each other but I don’t care about that. I know I have to struggle, I have to study hard, and I have to get a good job.

I want to convey a message to people with disabilities: ‘‘don’t confine yourself to the four walls of your home, come out and shine.’’ I also want to convey a message to all able-bodied people: ‘’Disabled people don’t need your money or attention, we want your respect.’’

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TMA Support Group in Houston

I am an RN and a fellow NMO survivor. After a complicated pregnancy four years ago, I began to suffer with leg numbness, tingling, and weakness. In 2012, I spent a week in the hospital with a diagnosis of transverse myelitis. After visits with 4 neurologists, 2 rheumatologists, and various other specialists, I was still left with no answers. Finally, in 2013, a neurologist diagnosed me with multiple sclerosis (MS) based on my symptoms. I tried 3 MS medications with continued disease progression, including optic neuritis, continued weakness, and a myriad of other “MS” symptoms. After a second opinion, and a positive AQP4 IgG, I was diagnosed with NMO earlier this year.

I currently live in the Houston metropolitan area and work for a Houston based company. I am married with a 5-year-old daughter and a 4-year-old son. My husband works in the refinery industry.

After researching support groups, I learned that there is a need in the Houston, TX area. It is my hope that a new group in Houston will help to bring survivors and their caregivers together to create a large network of support. I hope that our group can provide support, encouragement, education, and friendship.

~ Teresa Chapman