17 Things I Wish I Had Done Before I Became Transverse Mylitis

I have lived the hell of transverse myelitis for two years now, and so it seems right to give healthy people a few tips… things I wish I had done when I, too, thought I was untouchable.

woman hiking on gravel road

1. Attend every social event. After symptoms set in and you are sitting in bed, you will wish you could crash that party! If you have the energy, go. Support your friends and family. Be in the moment. People will embrace you… when you get sick and re-re-re-schedule plans, some won’t stick around.

2. Plot your new work fate. You, striding around the office, engaging and smiling until the record skips. When you become unable to sit upright you’ll wish for time to rewind so you can consider, without pressure, your new work life with chronic illness.

3. Be physically active. You likely have a body not plagued by nerve misfirings and random, nonsensical betrayals. Take care of it! Do it for the patients who can’t do it for themselves! Be fearless on that mountain bike, park in the last row. Hunt for tarantulas like I did one summer! Become the best version of yourself.

4. Purchase a disability insurance plan. I mean it. Right now. Put this article down and take a moment to set up the required $35 or so monthly payment. When you get sick you will never regret it.

5. Pay down on bills. Your car, credit cards — make deals and settlements (if you need to). Plot your finances. Build your savings. Two hundred dollars may mean making the bills… or not.

6. Don’t burn bridges. You never know who you’ll have to call. So, get comfortable calling. You are not demeaned because you need a hand with household chores. You are a person requiring assistance. No one can make you feel bad about it… but you. Embrace this way of thinking. It’s vulnerable and powerful!

7. Get honest about your relationships. When you move from an I’ll-figure-it-out-myself-conquer-the-world stance to I-might-never-be-fun-again, you better get right with your significant other. Tell yourself you are worth it. That you seeking help is no different than anyone else. Similarly, recognize taking care of another requires dedication, empathy and compassion. Give your support system kindness… and a break.

8. Travel whenever, wherever. Hotel getaways, last-minute airline deals. Go! Now! Make memories in foreign locations, take pictures, hold onto moments. After you are sick, days and nights may blend together and turn into year-round cabin fever.

9. Practice a healthy lifestyle. Too much fat, processed anything, cigarettes, an overload of alcohol, a sedentary life — nix it all. Post-diagnosis, you will sell your soul to restore your health. Solidify new habits now. If you don’t get sick, all the better.

10. Align your spirituality. Get centered in your head and heart. When you are unsteady physically, spirituality permits you calm. This peaceful consciousness will soothe you when you cry for what you’ve lost and when you ponder unbidden changes. Explore the energies of the universe, or accept non-existence. Work to find closure.

11. Listen to your body. When you need sleep, go to bed. When you’re full, stop eating. When you sense a cold coming on, improve your self-care. Tune into your body. Are you nutrient deficient? Predisposed to genetic conditions? Learn your family history to manage risk factors.

12. Discover a new passion you can do sick or well. Do you like adult coloring books, macrame, reassembling engines, what can you do to prevent ruminating on your disease? Whatever you decide, be certain it’s compelling.

13. Prepare your responses. My inbox overflowed with info on supplements, shakes, elixirs, oils, everything. Too much information froze me. Be unafraid to tell people how much you appreciate them, and that you will reach out when you’re ready. Remember, people extend themselves because your sickness breaks hearts.

14. Figure out an anger outlet. We make plans, go to school, pick up hobbies, RSVP. Then illness uproots everything. The loss of authority is infuriating. Processing a new reality is taxing, so allow your complicated emotions without self-beratement. It will cleanse you.

15. Don’t use up your tears. You will have many hours of crying into your hands, your pillows, across the desk from your boss, on the shoulder of a co-worker, against the chest of your beloved. You will weep until your nose is stuffy and your eyes throb. A difficult diagnosis involves grieving. It’s OK to surrender to it.

16. Get household repairs done. Pre-illness, I dabbled in home improvement. Post-illness, I pick my projects thoughtfully, because if I can’t finish them, they become my fiancé’s responsibility… as has happened, when I’ve lied to myself about my limitations.

17. Laugh at yourself. If you take your condition too seriously, you might never know lightweight bliss again. This is your opportunity to practice levity, to appreciate hysteria born of pain. Your learning is meaningful. Chuckling while trying to puzzle out the new you awakens humor in others and makes life more comfortable.


How I Went From ‘Pins and Needles’ to Transverse Myelitis in One Day

New Year’s Eve was peaceful for us. We did the same as usual, enjoyed some snacks, a bottle of wine, and watched “Hoot’nanny” on TV. We were a little subdued as my father-in-law had passed away suddenly the day before. It was a big shock, particularly as I was with him at the time.

I went to bed feeling fine. I didn’t even feel tipsy, just tired.

I woke up New Year’s Day with pins and needles all up my right side. I thought they would go away and got on with my day, busying myself as much as possible to take my mind off them. They didn’t ease, so I turned to Facebook and asked my friend for tips on how to get rid of pins and needles, but nothing suggested worked at all.

Around 11 a.m. I decided to call 111. I just wanted advice because these didn’t feel like normal pins and needles; they were overwhelming and even numbing. After taking my history, they decided to send out an ambulance, which I did not think was necessary since it was only pins and needles. The ambulance came, checked me over and wanted to take me to the emergency room. “But I’ve only got pins and needles!” I cried, “I don’t want to go to the hospital.” So, they left me.

An hour later the pins and needles started on my left foot and I felt them rising through my left leg and starting in my left hand. It didn’t feel right. Sheepishly, I called my brother and asked him to take me to emergency care.

I walked in just before 3 p.m. It took ages to be seen. I went to the bathroom and felt a bit shaky. At 5 p.m. the nurse finally called me to a cubicle, but I couldn’t stand up or walk. While on the cubicle bed I quickly lost all sensation in my arms and legs apart from the pins and needles. I had no strength at all and was paralyzed.

I was taken for an MRI, but unable to finish the scan since I had a panic attack. The next morning, I was given sedation and taken in for another MRI of my head and spine. The doctors informed me they found inflammation of my spine and called it transverse myelitis.

It is a pretty rare diagnosis in the U.K. unless you have multiple sclerosis, which I don’t. I’ve had blood tests and a lumbar puncture to look at the spinal fluid, but so far I have no answers as to why this happened to me.

I spent 12 days in hospital, five of them on intravenous steroids.

The day after my paralysis I regained my right arm, then slowly afterwards my left. A few days later I started to gain strength in my right leg, and 10 days later, a little strength in my left leg. However, the pain is continuous and the pins and needles have not stopped, not for a second. Everything feels strange and I’m hyper-sensitive to touch. The symptoms affect me from the waist down, and in both arms. Never in my life had I felt so awful, but I continued to remain positive.

anne's zimmer frame used for walking and balance. two red bows are tied to it.
Anne’s zimmer frame used for walking and balance.

It’s been three months since my diagnosis and the most useful thing I’ve learned is patience. I’ve learned that everything takes much longer to do now than it did before: showering, getting dressed, preparing a meal, even answering the front door. Most of all I’ve learned patience in waiting for my recovery. I had hoped that I would get better quickly; when I was in the hospital, two to eight weeks seemed like a lifetime. Now I’ve realized the road to recovery is long and slow.

I am so thankful to have found the Transverse Myelitis Society; it has been the biggest support since receiving my diagnosis. I’d advise anyone who finds themselves with this diagnosis to contact them. It’s helpful to find others who understand what you are going through and can answer questions, others willing to share your journey with you and advise you along the way. Many people do not get diagnosed with transverse myelitis right away because it’s such a rare condition. Most general practitioners have never heard of it. You may get misdiagnosed initially; common misdiagnoses include multiple sclerosis or Guillain-Barre syndrome. However, there are tests for these which can rule them out. Sometimes the onset happens quickly, like in my case, or it can be a long and slow attack. It can be caused by a number of illnesses or infections, or it can be caused by nothing at all.

Currently I can no longer walk unaided; I need a wheelchair when I go out. I’ve lost the ability to drive, and everything I do takes much longer than it did before. But, with patience, I’m taking each day as it comes. I feel happier now that I’m home and with my children, even if I can’t physically do as much as I’d like to for them. At least I can speak to them, read to them, and cuddle them. Transverse myelitis is now a part of my life and always will be, even if I do improve.



Kim’s Trek with Transverse Myelitis: Living in a fantasy.


Whoa has it been a while since I have blogged! I know I haven’t lived up to the promise that I made in May to blog more but I’v had my reasons.I’ll let you decide whether they are good ones or not.

Let me start by saying that I am a summer gal in all ways so when the weather gets nice I have a tendency to spend most of my time outdoors swimming, biking, running, walking,sailing etc…you get the idea I am sure.The last thing on my mind was blogging when I am sitting on a terrace enjoying the summer with my gal pals. I have also been training CJAD’s Andrew Carter to run a half marathon. He is trying raise awareness for the CTMA and I have been on the air talking about TM. Because Andrew is running the half so I am…I know that I said no more marathons but the Montreal Rock n Roll Marathon committee would only open spaces for a special cases…guess what TMers are special cases…so if I didn’t run…Andrew didn’t get a spot. The first time I ever had to use the fact that I have TM to get special treatment…and believe me when I say….I hate it!!! but I remind myself its getting me what I want so I should just shut up and kill my pride for once.(I should leave this for another post entirely)

P.S. never give up

In mid July I also started a new job, which I was very exited about getting. It allows me to work from home and I am just over the moon about that…no more dealing with Montreal traffic every morning and late afternoon.But you know how it is when you start a new job…there are a ton of things to learn, catch up on and this job was no exception.

Everything in my life was really going great and then in mid-July some extremely hot,humid weather hit Montreal and I went from training for a half marathon, biking, swimming to barely being able to get through a day. I basically got hit with every TM symptom at once…and I got hit hard…blind sided…yes even though I know I have TM…I feel like I was blind sided.

I went from being so close to normal to devastation in about 4 days. My runs were terribly hard as my left leg suffered terrible weakness,paraparesis and neuropathy. I had banding that lasted for hours on end,prevented me from sleeping and woke me up at odd hours of the night.My levels of pain and fatigue went through the roof and it took every bit of mental strength not to break down emotionally, not to feel angry that this ever happened to me and that I was diagnosed with TM.

The only thing that saved me from breaking down was that I could still run and the knowledge that better days would soon be ahead.But even at that, I found it tough mentally to stay the course,have faith and not run to the phone and call my neurologist. Sure enough last week things started to get better and while I am still in incredible pain I can see the light and this is a good thing. But in all of this; I have discovered that being so close to normal is very difficult, what do I mean by that??? well I have these periods (like after running the Halifax Marathon) where I can perform on such a normal level that I get into this almost fantasy where I forget about TM and it is so easy because I am just flying around demanding such athletics from my body and its doing it!! so I live this unreal fantasy that it is gone…TM is gone but the truth is, it’ll never be gone until my spinal cord can be fixed. Until that day comes, I will always live in and out of this self created fantasy where I am normal but get sobering wake calls from TM.

Is this healthy??? unhealthy???a denial on my part??? I don’t know but I have said this before…its easy to want to forget the incredible tough times in our lives,I am no exception. I think the toughest thing is that I have these euphoric periods where I am so close to normal physically that I can get lost in them, I am on a high, and the crash is great when TM strikes.

The fact that I can still do a ton of physically demanding things during these TM raids is something-I don’t know if its a testament to my stubbornness,determination or madness. But I do know that there is something inside of me that keeps myself mentally motivated to not give up and not give in…and while this disease tests my resolve…in the end it never breaks it.

I just want to thank my grandfather…for giving me such a stellar example of strength and grace in living life and in dealing with the toughest of times.I could not have made it through all of this without it to draw from and I hope he is looking down proudly.

Today’s thought:”People often say that motivation doesn’t last; well neither does bathing-that’s why we recommend it daily.”- Zig Ziglar



Outpatient Physical Therapy for Transverse Myelitis

Physical therapist working with man exercising

If you have been diagnosed with transverse myelitis, then you understand how this condition can affect your overall functional mobility and quality of life. Transverse myelitis can limit the way you walk, move in bed, and move from one chair to another. These functional limitations can have a profound effect on your ability to work and enjoy recreational activities.

Transverse myelitis is an autoimmune disease that affects the spinal cord.
The impairments caused by this disease process are quite variable. The location of the lesion in the spinal cord, the acuity of the disease, and the management of the disease after diagnosis can all have an effect on the impairments seen and the functional mobility limitations that are encountered as a result of transverse myelitis.

Physical therapy for transverse myelitis can occur in many different settings. When you are first diagnosed, you may work with a physical therapist in the hospital. You may also work with a therapist in sub-acute rehabilitation or at home to help you improve your mobility and return to maximal function.

Physical therapy for transverse myelitis may also occur in an outpatient setting.

Finding the Right Outpatient Clinic for Transverse Myelitis
Before starting outpatient physical therapy for transverse myelitis, you may wish to do a bit of research to ensure that your find the right physical therapist for you.

Start by locating physical therapists near your home, and phone a few to ensure that they are capable to help you manage your condition. Be sure to ask about prior experiences with other patients with transverse myelitis, and thoroughly explain your current condition and functional limitations. You may also want to ask some general questions about insurance regulations, office policies, and hours of operation.
Outpatient Physical Therapy Evaluation for Transverse Myelitis
You first visit to an outpatient physical therapist will likely be an initial evaluation and assessment. During this session, your physical therapist will meet with your to discuss your condition and history. He or she will also collect baseline data and measurements to help decide on the best treatment strategy for you.

Common components of the initial evaluation include, but are not limited to:

History: This component of the evaluation is where you tell your physical therapist about your current condition and how it has progressed since onset. Your past medical history will be discussed, and any other treatments you have had for your condition will be noted. Your current medications may be recorded, so it is a good idea to bring a list of any medicine that you are taking.
Outcomes measure: An outcome measurement tool may be used to help set goals and monitor changes in your functional mobility as you attend physical therapy. Common outcomes tools include the 6 Minute Walk Test, the Tinetti Balance Scale, or the Timed Up and Go Test. These tests may be repeated on a regular basis to monitor progress.

Gait: Gait is an assessment of the way you walk. Your physical therapist will monitor your gait and look for specific clues and patterns in your gait cycle that can help determine the best treatment for you. If you are using an assistive device like a walker, wheelchair, or a cane, he or she can make sure it is sized correctly and that you are using it properly.
Strength: Your physical therapist will test the strength in your arms and legs to get a baseline measurement of how strength deficits may be affecting your function.
Range of motion: Your physical therapist may use a goniometer to measure the range of motion (ROM) around specific joints. The baseline ROM measurements can be used to help determine progress as you attend physical therapy.
Spasticity: Spasticity is a complex impairment that occurs in the body when a problem like transvers myelitis occurs to the central nervous system. Your physical therapist can measure your overall tone and spasticity to help offer proper treatments for spasticity.
Flexibility: If you have had a lengthy hospitalization because of transverse myelitis, you may notice a loss of overall muscle flexibility and motion. Your physical therapist can measure your flexibility and can help improve your overall flexibility.
Balance: A diagnosis of transverse myelitis may affect your overall balance and kinesthetic awareness of your body. Your physical therapist will assess your balance in order to ensure that you are safe when moving around and to help guide treatment for any balance impairments that you may have.
Treatment for Transverse Myelitis
After an initial evaluation and assessment, your physical therapist should work with you to develop goals and an appropriate treatment strategy. Specific goals may vary greatly from person to person, but the overall goal of outpatient physical therapy for transverse myelitis is to maximize functional mobility to help you return to your previous lifestyle.

Since the impairments seen with transverse myelitis vary so much, it would be impossible to list a “cookie-cutter” treatment approach or protocol for transverse myelitis. Remember to work closely with your physical therapist to understand the treatment for your specific condition.

Common treatments for transverse myelitis include, but are not limited to:

Neuromuscular stimulation: Neuromuscular electrical stimulation (NMES) is a therapeutic modality often used in physical therapy. It is a form of electrical stimulation used to help contract one of your muscles or a group of muscles. If you are suffering from weakness in a specific muscle group as the result of transverse myelitis, your physical therapist may choose to use NMES to help improve the contraction of that muscle group in order to improve your overall function. Remember that NMES is a relatively passive treatment, and your physical therapy sessions should include active exercise and movement whenever possible.
Exercise: Exercises may be prescribed by your physical therapist to help you improve strength, ROM, and flexibility or reduce spasticity. Specific exercises may be prescribed to help improve your proprioception and balance. Your physical therapist may use exercise equipment such as a BAPS board to help improve balance, and a treadmill, UBE, or bike may help improve overall endurance and cardiovascular health.
Gait training: If you are having difficulty walking, your physical therapist can work with you on your gait. He or she will make sure you are using the proper assistive device for your condition, and exercises can be performed to help improve your overall gait.
An important component of gait, mobility, and walking is the timing of muscle contractions. Your therapist may choose to work with you to improve overall awareness and body control by performing exercises to help improve speed and timing of muscle contractions.

Discontinuing Outpatient Physical Therapy for Transverse Myelitis
A common question many people with transverse myelitis have is, “When should I stop attending skilled physical therapy?”

The answer to this question can be a difficult one since many different variables may affect your personal course of physical therapy for transverse myelitis. You may progress flawlessly through outpatient physical therapy and realize rapid gains in strength, ROM, and overall functional mobility. The outcomes measures and goals that you set when you began physical therapy may be easily attained, and your therapy can be discontinued in the clinic while you work independently at home.

Your condition may be quite severe, and your progression through PT may be slow and require quite a bit of work (and motivation) to achieve your personal goals. Be sure to work closely with your physical therapist and doctor to understand your specific condition and what to expect from physical therapy.

Remember that a diagnosis of transverse myelitis carries with it an overall variable prognosis. Your condition may leave you with mild to severe functional loss. Your physical therapist can work with you to ensure that you are able to achieve your maximal functional mobility, but occasionally physical therapy may be discontinued while you continue to experience functional limitations.

If you have been diagnosed with transverse myelitis, working closely with a physical therapist in an outpatient clinic may help you achieve your mobility goals and help you return to your previous level of function quickly and safely.



Accepting, not embracing our life with Transverse Myelitis: a mom’s point of view


I remember the first few weeks after my daughter, Erica, was diagnosed with Transverse Myelitis. I thought I was the only person in the world going through this experience. Inflammation, can’t an antibiotic take care of that?  If only I had someone to sit down with me and explain the life altering change we were about to go through. This feeling, even nearly 3 years later, is so isolating. That is why it is so important for me to reach out to other families.  I have learned so much from other parents and adults living with TM. I have also made wonderful, lifelong friends. I relate to them far more than with my childhood friends.

One night, about a week into our hospital stay of six long weeks, I had to get out of the room.  I couldn’t look anymore at the wheelchair staring at me. It was a reality check for me every morning. I had settled Erica for the night and asked the nurses to check on her. Before leaving the room, I asked her if I could bring her anything from downstairs. I was going for a Coke. She looked at me and said “yeah, Mom, can you bring me a new pair of legs?” Wow, the question knocked the breath of me. I went and cried for what seemed like hours over that request. I made a decision at that moment, to find some way to move forward with what was handed to us. I went back upstairs and told her that I found this really bad pair of legs in the waiting area, but they were extremely hairy and had ugly shoes. That comment made her smile and we laughed and cried together. I didn’t know what else to do but joke. My 12 year old daughter who lay there paralyzed from the waist down wanted new legs. She was an enthusiastic dancer and wanted to try out for cheerleading. How did this happen and why?

IMG_3097 copyI wanted to share that story because I remember thinking how do we get through this? Time and comfort from other parents and others living with TM. That is what has helped me. I finally met the point of acceptance sometime this past summer. I convinced Erica to go to a day sports camp and after begging and pleading, she went. I walked into the gym that first day without her knowledge and I saw her smiling. It was a smile I had not seen in over 2 years. She was playing basketball, which was a favorite pastime for her before TM.  I knew she had accepted life and I had to as well.

I met a family our first year at the TMA camp. I was amazed at how they acted, just happy. I, of course, was so angry at life and what we had lost. That was October 2011. This past summer at camp, we were back with that same family and the mom commented on how much I had changed. She was glad that I wasn’t angry anymore and really saw a difference in me and my whole family.  I don’t embrace what has happened, and trust me I have my moments, my days, even my weeks.  I still get mad when my daughter can’t just jump in the car and go out with friends. When even a trip to the mall is such a big event or seeing her sitting on a towel at the beach instead of acting like a teen should, I cry.

When I started writing this blog, I had no idea what I wanted to say. Erica lost complete function in less than 30 minutes and our lives changed forever.  I wanted to share how we have moved forward.  To have acceptance of our life changes has been freeing. I will never embrace what my daughter has had to miss out on, and I grieve for her loss. I do feel as if she and others have been completely robbed of so many things. However, this has opened so many doors for us. Erica is now in her first year playing basketball and can’t wait to go to college. She talks of her future and I know that she will accomplish all the goals she sets. From the beginning we have had the attitude of “I can do everything that I did before, just differently.” That is an attitude that, as a mother, is hard to keep sometimes.

I still don’t have answers to how and why and I know I will never get those. I do know that having TM has put us on another path in life.  I can’t tell her anymore to work harder and she can try out for cheerleading next year or that she will dance at next year’s recital, but I can tell her that life holds more for her than that.



Hepatitis-B Associated Acute Transverse Myelitis Mimicking Syringomyelia


Acute transverse myelitis is a rare clinical entity characterized by sudden onset of sensori-motor paralysis due to complete spinal cord dysfunction below a definite level, usually on the trunk. It may be precipitated by a number of conditions, especially vaccinations. Though hepatitis B vaccination can result in transverse myelitis, its occurrence following acute hepatitis B infection has never been described. Moreover, transverse myelitis presenting with features of syringomyelia is rare. We report the case of acute transverse myelitis associated with hepatitis B infection, which was clinically misdiagnosed as a syrinx.

Acute transverse myelitis (ATM) is a relatively uncommon neurological disorder characterized by inflammation of the spinal cord [1]. The inflammatory process often extends longitudinally over three or more segments and functionally transects the entire substance of the cord. This condition has diverse etiologies and has a well-known association with vaccinations especially hepatitis B vaccine [1]. Besides, several bacterial and viral infections are potential triggers for acute transverse myelitis. Acute transverse myelitis following hepatitis B virus infection has not been described in the literature. This case highlights the first report of acute transverse myelitis being a possible extra-hepatic manifestation of acute hepatitis B infection. The clinical presentation of transverse myelitis in this case had several overlaps with those of syringomyelia. In this report we discuss the significance of this new association of transverse myelitis and hepatitis B infection as well as some of the pitfalls in the clinical diagnosis of this condition.
Case Report
A 24 year old male smoker presented with sudden onset of weakness and loss of sensation over both upper limbs for 2 days. The weakness was symmetric, involving distal and proximal muscles and had not progressed since its onset. A few hours after onset of limb weakness, he noticed urinary retention as well. He also developed constipation a day later. There was no history suggestive of cranial nerve deficits, autonomic dysfunction or diffuse cerebral and brainstem involvement. The lower limbs were conspicuously spared. There was neither root pain nor localized vertebral pain. Low grade fever was present for 2 days, associated with malaise and anorexia.
On examination, he was conscious and co-operative with a pulse rate of 88/min and blood pressure of 110/70 mm Hg. General physical examination was within normal limits. Optic fundi showed no evidence of optic neuritis. Neurologic examination revealed normal bulk and tone of muscles. Proximal and distal muscle groups of both upper limbs demonstrated power of grade 2/5. Deep tendon reflexes were absent in the upper limbs. The patient was unable to sense pain and temperature along the distribution of C5 to T1 segments of the cord. However, fine touch, vibration and position sense were preserved in these areas, producing a characteristic dissociated sensory loss. Examination of lower limbs was normal, except for bilateral extensor plantar responses. In view of urinary retention, patient was on continuous bladder drainage.
The major differential diagnoses considered were syringomyelia, acute transverse myelitis and multiple sclerosis. Acute onset was against the diagnosis of syrinx, whereas involvement of more than three spinal segments and normal white matter on MRI brain made multiple sclerosis unlikely. Magnetic Resonance Imaging (MRI) of the spine [Fig.1] demonstrated intramedullary T2 hyperintensity with central hypointensity in the cervical spinal cord extending from C3 to T1 level with cord expansion, without any contrast enhancement, suggestive of acute transverse myelitis. Cerebrospinal fluid (CSF) analysis showed mild pleocytosis of 8 lymphocytes/µL with normal protein and glucose levels.
Workup for the underlying cause was carried out, including serology for human immunodeficiency virus (HIV). Hepatitis B surface antigen (HBsAg) was positive and further evaluation provided evidence for acute HBV infection in the form of IgM antibodies to the Hepatitis B core antigen (IgM anti-HBcAg).Liver functions and ultrasonogram of abdomen were normal. Autoimmune workup including anti-nuclear antibodies (ANA) was negative.
Following a neurology and neurosurgical consult, we started him on pulses of methyl prednisolone injection followed by oral prednisolone. After five days of steroid, minimal neurologic improvement was noted in the form of return of pain sensation. By the end of second week, we were able to remove the urinary catheter and by the third week, there was return to normal power in both upper limbs. Steroid was tapered over six weeks and stopped.
Acute transverse myelitis is characterized by protean neurologic deficits that develop over a period of several hours and progress over the next few days to weeks [2]. Spinal cord dysfunction is usually complete and involves the entire cross section of the cord, producing the typical transverse myelopathy. There is motor weakness of the limbs and trunk depending on the segments involved and sensory disturbances mostly in the form of reduced or absent sensations with a definite upper level. Cervical and thoracic cords are commonly involved [3]. In most cases, sooner or later, sphincter disturbances also appear [2]. Frank autonomic failure is less common.
Syringomyelia on the other hand develops insidiously with a typical suspended segmental sensory loss, often leading to a cape like distribution of sensory deficit involving the upper extremities [4]. There is often distal muscle weakness and wasting, and painless burns of fingers. Sparing of the posterior columns and segmental encroachment of the spinothalamic tracts by the expanding syrinx leads to the phenomenon of dissociated sensory loss. In our case, the patient had an acute presentation of symmetric weakness of upper limbs and dissociated sensory loss of upper limbs. This led us to the initial clinical diagnosis of syringomyelia of cervical cord with an acute onset. Such presentations of syrinx have been reported to occur following spinal trauma [5]. However, there was no antecedent trauma in our patient. Other etiologies for syringomyelia include spinal tumors, congenital anomalies and myelomalacia. Association of syringomyelia with inflammatory disorders of nervous system is extremely rare.
MRI of the spine has become an invaluable tool in the diagnosis of acute transverse myelitis. In our case, the diagnostic dilemma was between structural abnormalities versus inflammation of the cord. MRI revealed intramedullary T2 hyperintensity extending from C3 to T1 segments. Thus our case fulfilled the diagnostic criteria by the Transverse Myelitis Consortium Working Group [6], which consists of bilateral signs or symptoms of spinal cord dysfunction, a definite sensory level, spinal cord inflammation as evidenced by CSF pleocytosis or MRI findings and progression to peak neurologic deficits between 4 hours and 21 days.
The imaging in this case is typical of a longitudinally extensive transverse myelitis (LETM), a term that has become widely accepted following several recent studies [7,8]. This term is used to distinguish non-compressive spinal cord dysfunction in which MRI demonstrates T2 hyperintensity of the gray matter extending over 3 or more vertebral segments [9]. Although etiologically LETM encompasses several groups of diseases like infections, inflammation, radiation, autoimmunity and malignancy, its significance probably lies in its contrast to the myelitis associated with multiple sclerosis. Studies have demonstrated that when acute transverse myelitis occurs as part or harbinger of multiple sclerosis, fewer than three segments show imaging abnormality [10]. Moreover, cord expansion as was seen in our case, is also more common in LETM without any identifiable causes [11].
In a review of vaccine related acute transverse myelitis [1], hepatitis B vaccine was found to be the most common vaccine associated with LETM. Several others like Oral Polio vaccine (OPV), diphtheria-tetanus-pertussis (DTP) and influenza vaccines have also been reported to cause this adverse event [1]. Apart from vaccines, a host of infectious agents have been implicated to cause transverse myelitis. The list includes mostly viruses such as Ebstein Barr virus, HIV, HTLV-1, Hepatitis A and Hepatitis C virus and bacteria like Mycoplasma pneumonia and Mycobacterium tuberculosis [12,13]. Parasites like Schistosoma and Ascaris have also been reported as possible etiological agents [13]. However, Hepatitis B infection has not been reported to trigger acute transverse myelitis. This is quite interesting as vaccine against the same virus is among the most frequent cause for transverse myelitis. In the case of post-vaccinal and post-infectious transverse myelitis, many mechanisms have been proposed including molecular mimicry [14], polyclonal B cell activation and epitope spreading [15]. The end result of these phenomena is development of autoimmunity. It is logical therefore, to hypothesize that this was the case in our patient as well.
Since ATM is a rare disorder, there are no well-established management guidelines. The treatment in most cases is immunosuppression, steroids being the first line agents [13]. The scenario however, is complicated when an infective association is identified. Our patient had an acute hepatitis B infection, and therefore the opinion on steroids was divided. Considering the degree of functional disability and after discussion with the patient, we arrived at the consensus to start steroids with careful monitoring of the liver functions and viral load. Following initiation of steroid, neurologic deficits improved slowly but steadily without any evidence of worsening liver functions or heightened virologic activity. Other therapeutic options available are plasma exchange, azathioprine, methotrexate and Infliximab [13]. Intravenous immunoglobulin has no role in the management of ATM [13].
Our case highlights certain important issues related to ATM. First, clinical diagnosis of ATM can be challenging especially if lower limbs are spared and atypical features as in our case are present. A combination of clinical features, CSF findings and MRI abnormalities (especially suggestive of LETM) should be used to achieve an early diagnosis. A short segment transverse myelitis and normal MRI of the brain significantly reduces the likelihood of multiple sclerosis related ATM. Second, apart from a search for autoimmune disorders, a broad infectious workup is essential to identify a post-infectious etiology. This should include serology for hepatitis B as well. Third, early treatment with steroids may alter the outcome of this devastating disease, and hence this option should be exercised judiciously. It might be beneficial even in the setting of an acute infection, if adequately monitored, as evidenced by our case.
Longitudinally extensive transverse myelitis is a distinct clinico-radiologic entity that is being increasingly recognized. The Transverse Myelitis Consortium Working Group criterion enables more objective diagnosis of ATM especially when clinical features are atypical. Although rare and not reported to date in literature, screening for hepatitis B infection should be part of workup of any case of ATM. Early and judicious treatment with steroids may have a remarkable effect on the outcome of the disease.

Physical Therapy for Transverse Myelitis

Transverse myelitis is a disorder of the spinal cord that may cause a number of impairments that can lead to significant loss of functional mobility. It is defined as an auto-immune inflammatory disorder of the spinal cord, and it typically occurs at one specific level of the spinal cord, although the inflammation may span multiple levels.

There are many causes of transverse myelitis, and it may occur spontaneously or as the result of a more encompassing disease process.

Photo of physical therapist working with older adult.
Common causes include, but are not limited to, multiple sclerosis, neuromyelitis optica, lupus, sarcoidosis, Sjogren’s Syndrome, or Lyme disease. When transverse myelitis occurs spontaneously it is called idiopathic transverse myelitis.

Common Symptoms of Transverse Myelitis
There are many symptoms of transverse myelitis, and your specific symptoms may vary depending on which level of the spinal cord is affected by the disease. Remember that the spinal cord is a bundle of nerves that communicates with muscles to cause movement and with the brain to monitor sensory changes. Therefore, symptoms can vary widely in transverse myelitis.

Common symptoms include, but are not limited to:

Rapid, progressive weakness or paralysis in the legs, occasionally progressing to the arms
Numbness or tingling in the legs
Diminished sensation, such as decreased sensitivity to pain or temperature sensation
Spasticity in the legs
Difficulty with coordination
Loss of bladder and bowel control
Upper, mid, or low back pain may accompany these symptoms as well. Typically, the symptoms of transverse myelitis progress rapidly over a course of a few hours or days.

If you are experiencing any of these symptoms, you must go to your doctor or local emergency department immediately for accurate diagnosis and treatment.
Physical Therapy for Transverse Myelitis
If you are diagnosed with transverse myelitis, you may encounter a physical therapist at various points during your treatment for the disease. You may work with a physical therapist in the hospital, at an inpatient rehabilitation center, at home once you leave the hospital, or in an outpatient physical therapy clinic.

The main goals of rehabilitation for transverse myelitis are to restore maximal functional mobility and capabilities. Achievement of this goal often requires the work of many healthcare providers. These include your physical therapist, occupational therapist, speech therapist, physician, nurse, social worker, and perhaps a psychologist. All of these professionals must work together to help you maximize your functional mobility and potential.

Physical Therapy for Transverse Myelitis in the Hospital
If you are in the hospital and diagnosed with transverse myelitis, a physical therapist will likely evaluate your condition and work with you to maximize your functional mobility.
He or she will work with other rehabilitation professionals to help determine an appropriate discharge plan, either to home or to inpatient rehabilitation.

While in the hospital, your physical therapist can help you choose and use an appropriate assistive device for walking, and he or she can help you recover basic functions like moving in bed, transferring from your bed to a chair, and walking up and down stairs, if you are able to do so. Your physical therapist will also develop an exercise program for you to do help improve your strength and overall coordination.

Inpatient Rehabilitation for Transverse Myelitis
If you require more intensive rehabilitation after your acute hospital stay for transverse myelitis, you may be referred to inpatient rehabilitation. There you will work with your physical therapist multiple times per day to continue to improve your functional mobility. Your physical therapist may work jointly with an occupational therapist to improve your mobility while performing specific tasks like dressing, toileting, or eating.

Inpatient rehabilitation can provide you an intensive level of care to help maximize your functional mobility to prepare you to return home safely and quickly.

Home Care Physical Therapy for Transverse Myelitis
Once you are sent home from the hospital or rehabilitation center, you will likely wish to continue with your rehabilitation. If you are unable to leave the house, often a home-care physical therapist will come to your house to work with you.

Your home-care physical therapist can help progress your walking ability and gait, and he or she may work with you to improve your stair climbing ability. If you are not able to walk independently, your physical therapist can help you learn to maneuver a wheelchair and appropriate recommendations can be made for suitable wheelchair for you.

Outpatient Rehabilitation for Transverse Myelitis
Once you are able to leave the house, you may wish to continue your rehabilitation at an outpatient physical therapy clinic. There you will likely have access to exercise equipment to help maximize your strength, balance, flexibility, and functional mobility. Your physical therapist in outpatient PT can devise an appropriate long term exercise routine to help you maximize your overall potential and mobility.

Even with the most rigorous physical therapy and rehabilitation program, the prognosis for transverse myelitis is variable. About 1/3 of people with the diagnosis recover fully, another 1/3 are left with mild to moderate degree of disability, and 1/3 of people with transvers myelitis are left with significant functional loss and disability. Be sure to work closely with your doctor to understand the factors surrounding your specific condition that may have an impact on your prognosis.

If you are diagnosed with transverse myelitis, it is essential that you have a plan of care the can maximize your overall functional mobility. Your physical therapist is one member of your rehabilitation team who can help you reach your full potential.


Rehabilitation in Transverse Myelitis
Carr, J. H. (2000). Neurological rehabilitation: optimizing motor performance. Oxford: Butterworth Heinemann
The Transverse Myelitis Association


What Are the Most Common Transverse Myelitis Symptoms?

The most common transverse myelitis symptoms are pain, weakness in the extremities, changes in sensory perception, and problems with bowel and bladder control. These are considered the four classic signs of the condition, and while they do not appear in every case, usually patients experience a combination of two or more symptoms when they develop this condition. In transverse myelitis cases, inflammation attacks the spinal cord, impairing function across the cord from that point on down. Patients with this condition can experience various symptoms depending on the level of the inflammation.

Acute cases onset quickly, sometimes within hours, while subacute transverse myelitis may unfold over several weeks. Patients will notice transverse myelitis symptoms below the level of the injury and on both sides of the body, so high level inflammations are much more serious. People who notice neurological symptoms of any kind, including those associated with this condition, should receive a medical evaluation to find out more.

Pain is a warning sign indicating that something is going wrong with the conduction of nerve signals. Patients can experience pain below the level of the inflammation that may vary from a mild pins and needles sensation to more sharp, stabbing pains. These pain signals are not associated with any sensory stimulation like exposure to heat.



Brookies Transverse Myelitis Treatments

Brookie has come such a long way from where she was at 15 months old in September 11, 2012. She is now 2 and a half! Back then, she was laying in a hospital bed and couldn’t move from the neck down. We were scared for her life and didn’t know what was wrong. She was diagnosed with Acute Idiopathic Transverse Myelitis. Since that diagnosis God has been working miracles. Brookie has gained back full movement from mid stomach up. She has been going to therapy between 3 and 5 days a week since October 2012 and seen countless numbers of doctors and specialists. Unfortunately, she has very little movement in her legs and she is still incontinent. We have not seen any drastic improvement in months and have been told by many doctors that this is about as good as she is going to get. We are not ready to settle for “as good as it will get”! We feel like there are more options out there for our daughter to try and are ready to start pursuing those options. Sadly many of these options include treatments that are not covered by insurance and we will incur costs for travel, hotel, etc.
The first treatment we would like to try is Hyperbaric Chamber treatment. It has been shown to help people that have spinal cord damage like Brookie’s. Because it is not covered by insurance we are taking on the cost ourselves. The first round will be 40 treatments. Each treatment is $140 and we will be doing 2 a day for a month.
We would really like to get Brookie into the Kennedy Kreiger Institute in Baltimore Maryland. They are doing cutting edge treatments on patients with Transverse Myelitis and we would like to see what they can do for Brookie. Some of this will be covered by insurance but a large portion will not be covered. Including airfare, hotel stays, time off of work, childcare for our other children etc. The cost for Kennedy Krieger will be in the few thousand dollar range when all is said and done.
We still need a few items for Brookie’s home physical therapy. She needs a treadmill, a special exercise bike, and a few custom made balancing/stretching tools.
Brookie is supposed to go visit her doctors in Seattle and her doctors in Dallas every 6 months. This cost has been too much for our family to take on ourselves so she is a little behind in her visits to them. Your donations would help her to get to these important visits.
Lastly, there is a Transverse Myelitis family camp in Kentucky every summer. The cost of flying our whole family down there and taking a week off of work is huge for us. We would love to go down there and meet other families that are going through the same things our family goes through. There are also doctors there from all over the country that have sessions on the research they are doing and treatments they are trying. It would be a huge blessing for our family to attend this summer.
All these costs added up are around $15,000 to $20,000. With some costs reoccurring every few months. Brookie’s daddy has just taken a job working in the North Dakota oilfields to help pay off this debt and pay for some of these expenses. We are going to miss him but are so proud that he is willing to work so hard to take care of our family and all of these expenses we have. As Brookie’s parents we will not stop until we know we have tried everything we can to get her well. It is hard to take on all these costs on our own and we are ready to reach out to you for help. Even if you can’t help financially if you could be praying that God keeps working miracles in Brookie’s healing we would be so grateful. She has come a long way since her initial diagnosis but she still has a long way to go.

God bless you in advance for your prayers and donations.
The Gossard Family



What I Lost — and Gained — Thanks to Transverse Myelitis

My symptoms kicked off strangely, but fittingly around April Fool’s Day 2014 after a shower. I’d dried off, but my legs still felt wet in patches. Scrubbing at them with a towel didn’t help. When sensations waxed and waned over the next several weeks, I presumed a cervical injury had blown another disc.

Minor inexplicable bodily issues usually dissipate, I told myself. Until my fingers and toes started tingling. Vertigo hit, lasting seven months. My right leg spasmed, gripping me from the hip down merely from stirring in bed. It didn’t hurt so much as it was a rigor to withstand.

I lost my balance, my gait reduced to stumbling atop the planks of a listing ship. Co-workers supported me as I reeled along. A fitting analogy describing optical issues became eyeball murder party, reservations for one. Indescribable fatigue descended. I wished I could lie down — when I was lying down! I shook, and forgot information. My mouth burned, my throat iced and stole my breath.

I endured ride after ride in the MRI machine, countless blood tests, medication side effects, a terrifying lumbar puncture, bizarre-seeming procedures and physical therapy. Four months later, upon hearing the name of the culprit, I was foolish enough to feel lucky.

As of this writing, I have reinvented myself and my career. My relationship has proven to be unbelievably resilient. I am beyond proud of my superhero kids.

Hilary in her transverse myelitis t-shirt.

Hilary in her transverse myelitis t-shirt.

Before I could get to this state, I had to lose almost everything.

Categorized by the National Organization for Rare Disorders, transverse myelitis (TM) affects all ages, races and both sexes, and is defined as “… a rare inflammatory disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction…” Approximately 75 percent of cases areidiopathic. Symptoms mirror multiple sclerosis (MS).

The National Institute of Neurological Disorders and Stroke reports “…about one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third experience only fair recovery and are left with significant deficits such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third experience no recovery at all…”

There is no cure.

My body attacked the myelin sheathing on my spine. Electrical signals traveling through that area are interrupted, eliciting symptoms striking at the height of the lesion and below. Once, my foot deadened withinseconds, as if it had been asleep for 20 minutes! Three neurologists can’t tell me why my tongue burns as if zapped on a 9-volt battery, and I spark like a blown fuse. So every six months I hop in the scanning tube for funsies.

I have become uncomfortably numb.

I consider myself fortunate, having contracted subacute transverse myelitis. Acute TM can cause paralysis and even death.

An attempt to dig up research dollars yielded zero results because only about 1,400 Americans are diagnosed each year.

We lean heavily on support group members.

The Transverse Myelitis Folks (Blue Crew), a Facebook group (and extension of my family) run by Kevin Weilacher, provides encouragement, credible resources and life-changing positivity. Weilacher advises, “never take life for granted, because your life can ­change in an instant.”

Member Justin Hephner’s ability to walk again is attributed to his 40 years of martial arts study, arguing that the healthier a person is prior to onset, the greater their potential for complete recovery.

Liz Gardner, who has since has lost the use of her hands, had never heard of transverse myelitis, even though she’d worked in health care.

Neither had my mom, who has been in the field for nearly 40 years.

We love our community’s TM children fiercely, those whose mobility has been affected. Infants who can’t walk, toddlers breathing through a vent. When our kids make strides, tears wet our cheeks.

People call me courageous. I’m just refusing to be defined.

All I can do is meet each day head on, no matter what it brings — a relapse, a fresh lesion stealing another function.

Or my life.

Because of my new situation, I alternately run on 100-proof anger and determination, grasping hope so I don’t drown in sadness. I hate the new physical me, while also recognizing what I’ve learned from the experience. I am kinder, less-panicky and more accepting. TM made me vulnerable. I had no choice but to reach out. It wasaccept me or don’t.

My children were furious and scared, and we all yearned for a diagnosis while dreading to know the truth. Out of frustration, everyone cried and screamed obscenities during family meetings.  But we have surpassed those times. Now as my fiancé and I prepare to marry, our little clan knits closer together using the miles of road we have traversed.

I am at last good enough. Exactly as I am. Oddly thanks to transverse myelitis.