What is Transverse Myelitis?

The Spinal Injuries Association is the Australasian affiliate of the TM Association in the USA, with TM Networks based in Australia and New Zealand. Transverse Myelitis, or TM, is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. Who gets TM? TM occurs in adults and children, in both genders, and in all races. No familial predisposition is apparent. What causes TM? Researchers are uncertain of the exact causes of transverse myelitis. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord. Transverse myelitis also may occur as a complication of syphilis, measles, Lyme disease, and some vaccinations, including those for chickenpox and rabies. Cases in which a cause cannot be identified are called idiopathic. What are the symptoms of TM? TM may be either acute (developing over hours to several days) or subacute (developing over 1 to 2 weeks). Symptoms vary but can include: lower back pain headache, fever and loss of appetite

abnormal sensations such as burning, tickling, pricking, or tingling in the legs sensory loss muscle spasms partial paralysis of the legs How is transverse myelitis diagnosed? Physicians diagnose TM by taking a medical history and performing a thorough neurological examination. How is TM treated? As with many disorders of the spinal cord, no effective cure currently exists for people with TM. Treatments are designed to manage and alleviate symptoms and largely depend upon the severity of neurological involvement.

What Is Transverse Myelitis?

Transverse myelitis is a rare neurological disorder of the spine that is caused by inflammation across the spinal cord. Inflammation is usually a protective response, which generally includes swelling, pain, heat, and redness. However, in the case of transverse myelitis, the inflammatory response causes damage to the spinal cord, resulting in varying degrees of weakness, sensory symptoms, and autonomic dysfunction. The symptoms and dysfunction that occurs is usually dependent on the level of the spine where the inflammation is located. Transverse myelitis is believed to be linked to the immune system. It is possible that the immune system is attacking the bodys own spinal cord. Unfortunately, the immune system can attack rapidly without warning, resulting in devastating impairment. Transverse myelitis generally occurs on a single occasion. However, a small number of individuals may experience a recurrence. Transverse myelitis is sometimes associated with other diseases, such as systemic autoimmune diseases. Systematic immune diseases include diseases such as systemic lupus erythematosis and sarcoidosis.

What do the different transverse myelitis terms mean?

There are quite a few different ways that people (and physicians) refer to transverse myelitis. Transverse myelitis has been referred to as a disorder, disease, condition, and syndrome. Below is an explanation of the various terms.

o o o o o o o

What is Myelitis?: Indicates inflammation of the spinal cord. What does Transverse mean?: Indicates that the inflammation is positioned across the width of the spinal cord. What is Transverse Myelitis?: Spinal Cord inflammation that is positioned across the width of the spinal cord. What is Acute Transverse Myelitis?: Indicates an acute (rapid onset) of spinal cord inflammation that is positioned across the width of the spinal cord. What is Partial Transverse Myelitis?: Indicates spinal cord inflammation that is positioned across partial width of the spinal cord. What is Acute Partial Transverse Myelitis?: Indicates an acute (rapid onset)of spinal cord inflammation that is positioned across partial width of the spinal cord. Myelopathy: A term used to refer to any disorder of the spinal cord (including transverse myelitis).

Whats actually happening in the spinal cord?

Transverse myelitis affects the grey and white matter of the spinal cord. It can affect the entire thickness of the spinal cord.

The damage to the spinal cord can result in a lost or fuzzy signal between the brain and parts of the body. Therefore, symptoms of transverse myelitis are highly dependent on the location and severity of the spinal cord damage. The following list outlines which section of the spine relays signals to which parts of the body:

cervical (neck) nerves: relay signals to neck, arms, hands, and breathing muscles thoracic (upper back) nerves: relay signals to torso and arms. lumbar (mid-back) nerves: relay signals to hips and legs. sacral nerves: relay signals to groin, toes, and legs.

Generally, damage at one segment of the spinal accord will affect functions at that segment and the segments located below it.

How common is Transverse Myelitis?

Transverse myelitis is a rare disorder. Approximately one to five new cases per mission people per year are diagnosed. Transverse myelitis can affect all persons, regardless of gender, age, or race. However, it most commonly affects individuals between the ages of 10 and 10, and 30 and 39.

How severe is Transverse Myelitis?

The severity of transverse myelitis is highly dependent on the extent of the inflammation of the spinal cord. The severity is also impacted by the level of the spinal cord that is affected by the inflammation. Typically, the higher the spinal cord is affected, the more severe the impairment. For example, inflammation at the C5 level will generally result in more severe impairment than inflammation at the T1 level.

Transverse Myelitis Causes

There are many possible causes of transverse myelitis. This article discusses the possible causes of transverse myelitis. Transverse myelitis often appears as a condition in isolation of other related issues, and sometimes it appears to result from another illness. The exact cause of transverse myelitis is unknown. When transverse myelitis occurs without an identified underlying cause, it is defined as idiopathic. Idiopathic transverse myelitis is often believed to be caused by an immune system response. In this case, the spinal cord is attacked by the bodys own immune system.

What underlying causes can result in transverse myelitis?

Experts believe that twenty to forty percent of transverse myelitis cases are caused by viral infections. The following conditions are possible underlying causes of transverse myelitis in some patients:

Epstein-Barr Herpes (simplex or zoster) HIV Influenza Leukemia Lyme borreliosis Multiple Sclerosis Mycoplasma pneumoniae Neuromyelitis optica Paraneoplastic syndrome Rabies Sjogrens syndrome Sarcoidosis

Syphilis Systemic autoimmune disease Systemic lupus erythematosis Tuberculosis Vascular

What is the cause of idiopathic transverse myelitis?

Idiopathic transverse myelitis refers to cases of transverse myelitis when the cause is unknown. Although the cause is unknown, most evidence indicates that the transverse myelitis occurs due to an autoimmune process. In this case, it is the bodys own immune system that attacks the spinal cord, which causes inflammation and damage.

Transverse Myelitis Symptoms

Transverse Myelitis Symptoms

Transverse myelitis symptoms depend on the location and severity of the inflammation in the spinal cord. Symptoms of transverse myelitis can be roughly categorized into four groups:

Muscle Weakness Sensory Alteration Pain Bowel and Bladder Dysfunction

Muscles Affected by Transverse Myelitis

The nerves in spinal cord relay signals to various muscles in the body. A lesion on the spine can display various muscle weakness symptoms in patients. Therefore, the muscles that are affected by Transverse Myelitis are generally dependent on the location of the lesion. When there is damage to the spinal cord (such as transverse myelitis), many muscles of the body can be affected because the brain can no longer communicate effectively with other parts of the body. When the spinal cord is damaged, the communication can be mixed up with the muscles that communicate through the spinal cord nerves in that area. Additionally, the muscles that communicate through nerves on the spine below the lesion can also be affected. Therefore, if the lesion is located in the cervical cord, the muscles that communicate through the thoracic, lumbar, and sacral segments are usually affected as well.

Sensory Alteration
Patients often report a large variety of sensory-related transverse myelitis symptoms. These symptoms commonly include numbness, burning, coldness, or tingling. Patients sometimes report that clothes feel uncomfortable due to a feeling of tightness. Some fabrics can also cause patients to feel increased sensitivity when the fabric comes into contact with the skin.

Approximately 80% of transverse myelitis patience report a heightened sensitivity to touch. Some patients report a loss of the ability to feel pain, or loss of the ability to distinguish the difference between hot and cold temperatures.

Pain
Approximately 50% of patients experience pain as one of the first transverse myelitis symptoms. The location, description, and severity of the pain varies from patient to patient. Patients commonly experienced pain in the back area, or a pain that radiates down the legs or arms.

Bowel and Bladder Dysfunction

Transverse myelitis symptoms can sometimes include bowel and/or bladder issues as the first indicator of transverse myelitis. This can sometimes begin as an increased frequency or urge to urinate or defecate. Or, it can begin as incontinence, difficulty voiding, or a feeling that complete evacuation cannot be achieved. Many patients report issues with constipation.

Transverse Myelitis Diagnosis

Because the cause of transverse myelitis is unknown, patients are usually diagnosed with transverse myelitis by ruling out the other possible causes of the patients symptoms. Currently, there is no single test or simple way to diagnose a patient with transverse myelitis. There are differing opinions on the best way to diagnose a case of transverse myelitis.

What tests are conducted to diagnose transverse myelitis?

In order to rule out other diseases and disorders, physicians usually review and analyze detailed information about the patients medical history. Physicians must also conduct a physical examination and a number of additional tests. Below is a list of tests that are often conducted prior to diagnosing a patient with transverse myelitis:

Blood Tests: Used to screen for possible viruses or vitamin deficiencies. MRI (magnetic resonance imaging): Provides images of the brain and spinal cord so that lesions can be identified. Lumbar Puncture: Provides information about white blood cell count and immune system activity.

WHAT INFORMATION DOES THE MRI TEST PROVIDE?

MRI tests provide physicians with images of your spinal cord and brain.

Physicians may or may not take MRI images of your entire brain or spine. Depending on your symptoms, the physician may conduct the test in the region where a lesion may be suspected. Lesions can sometimes indicate other issues such as a herniated disc, tumor, or stenosis. Therefore, if a lesion is found, it still does not mean that the patient has transverse myelitis.
WHAT INFORMATION DOES THE BLOOD WORK PROVIDE?

Blood tests can be conducted to screen for numerous diseases and disorders. Prior to diagnosing a patient with transverse myelitis, the following blood tests are often conducted:

lupus HIV infection B12 vitamin deficiency

WHAT INFORMATION DOES THE LUMBAR PUNCTURE PROVIDE?

A lumbar puncture involves removing a small amount of spinal fluid from the spinal cord. It is not a pleasant test, but it can often provide very important information in the diagnosis of transverse myelitis. The spinal fluid provides information about white blood cell counts. It can also demonstrate any abnormal activity of the immune system.

Transverse Myelitis Treatment

Transverse Myelitis Treatment

There is currently no effective cure for transverse myelitis, and very few experimental treatments in the news. However, there are many different treatments that are offered to patients with transverse myelitis:

treating any underlying cause (if known). halting the progression of the damage to the spinal cord learning to cope with the physical and psychological issues that result from living with new limitations and challenges.

Most transverse myelitis treatment aims to manage and alleviate symptoms of the disorder. The symptoms that result from transverse myelitis are generally neurological in nature, such as nerve pain. In addition to pain and physical disabilities, patients must learn to cope with the psychological and emotional impact of living with new limitations and challenges. In some cases, patients require treatment and counseling for depression. Most experts agree that treatment for transverse myelitis should generally begin as soon as possible.

Which transverse myelitis treatments are used at the initial onset?

The initial transverse myelitis treatment can depend on a number of factors such as symptoms, test results, progression, etc. In idiopathic cases of transverse myelitis, a high-dose of intravenous corticosteroids are often administered. Sometimes, the treatment is followed by plasma exchange therapy. The effectiveness of both treatments is uncertain. In almost all cases, bed rest is often highly recommended during the initial days and weeks after onset of the disorder. Below are some common initial transverse myelitis treatments:

Intravenous steroids (corticosteroid medications): This treatment is believed to help reduce the inflammation in the spinal column. Plasma exchange therapy: This treatment is believed to remove antibodies that are involved in the inflammation. Pain Management: This treatment aims to provide comfort to the patient.

Other Treatments: There are additional treatments that have been prescribed for transverse myelitis patients.

CORTICOSTEROID MEDICATIONS

Physicians often prescribe a high dose of intravenous steroids immediately following the onset of symptoms or diagnosis. These medications can include those such as methylprednisolone or dexamethasone. Corticosteroid medications are believed to work by reducing the activity of the immune system to prevent the immune system from attacking the myelin of the spinal cord. Of course, this treatment would only be selected by physicians who believe that transverse myelitis is partially or fully autoimmune in nature. Clinical studies are few, or non-existent, in the investigation of the impact that corticosteroid medications have on the course of transverse myelitis. No studies have provided evidence that this treatment is effective. After administering this treatment, it is believed by some that about half the people with transverse myelitis will recover within six months. This method is generally administered for patients with acute transverse myelitis. Intravenous steroids are usually prescribed for between three to five days. The patient is often prescribed oral corticosteroid medications to taper the patient off the high dosage. Some patients are prescribed oral corticosteroid medications for longer periods of time. However, the decision to continue steroid medications or to add a new treatment is usually dependent on the MRI results at the end of the high dosage corticosteroid treatment.
PLASMA EXCHANGE THERAPY

Plasma exchange therapy has shown some positive results for transverse myelitis patients. Plasma exchange therapy is generally chosen for those with moderate to severe TM who dont show much improvement after being treated with intravenous steroids.
PAIN MANAGEMENT

One of the first symptoms reported by patients is pain. The initial pain management generally includes nonsteroidal anti-inflammatory drugs. Nonsteroidal anti-inflammatory drugs can include:

aspirin ibuprofen (e.g. Advil, Motrin) naproxen (e.g. Aleve, Naprosyn)

These drugs are helpful in relieving pain, and reducing inflammation.

Patients can also be prescribed pain medication for long-term treatment, after the initial treatment is complete.
OTHER TRANSVERSE MYELITIS TREATMENT OPTIONS

Some patients have been treated with intravenous cyclophosphamide. Cyclophosphamide is a drug that is often used to treat lymphomas or leukemia. When physicians choose to treat with cyclophosphamide, an experienced oncology team is involved in the administration of the drug. Patients that experience recurrent TM are sometimes treated with chemical agents that modify immune response. These treatments can include methotrexate, azathioprine, and mycophenolate or oral cyclophosphamide.

What happens after the initial treatment of transverse myelitis?

Following initial treatment, It is critical to keep the patients body functioning. There is a chance the patient can experience complete or partial recovery during this time. If the respiratory system is involved, the patient may be placed on a respirator. Patients that are showing acute symptoms (such as paralysis) are generally treated in a hospital or rehabilitation center. If a paralyzed patient begins to recover limb control, long term physical therapy can be applied to improve range of motion and strength. In almost all cases, bed rest is often highly recommended during the initial days and weeks after onset of the disorder.

What therapies are used for long term transverse myelitis treatment?
Transverse myelitis treatment is generally tailored to fit the needs of the patient. Each patient can have different levels of disability, different levels of pain, and different symptoms. Below is a list of both common and less common long term treatments of transverse myelitis:

Pain Management Physical Therapy Occupational Therapy Depression treatment and counseling Accupuncture Massage Therapy

PAIN AND SYMPTOM MANAGEMENT

Physicians may prescribe medication for long-term treatment depending on the patients symptoms and any complications the patient may be experiencing.

Transverse Myelitis Prognosis

Transverse myelitis recovery varies from case to case. Therefore, it is extremely difficult for physicians to make predictions about the recovery level for individual cases. Generally, the more rapid the progression is, the worse the transverse myelitis prognosis. If a patient experiences intense pain, it could indicate a higher intense level of inflammation.

When does transverse myelitis recovery begin and how long does it last?
Transverse myelitis recovery generally begins between 2 to 12 weeks after the onset of the symptoms. Recovery may continue for up to 2 years. Generally, if there is no improvement within the first 3 to 6 months, the chance of significant recovery is severely reduced.

What level of recovery do most patients experience?

Transverse myelitis prognosis generally varies from individual to individual. However, heres the general prognosis rule:

About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms: These patients regain the ability to walk normally, and experience minimal urinary or bowel issues. About one-third show only fair recovery and are left with significant deficits: These patients can be left with conditions such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence About one third of patients do not recover at all: These patients are often wheelchairbound or bedridden with marked dependence on others for basic functions of daily living

You may be interested in reading about various Transverse Myelitis Treatmentoptions that can aid in transverse myelitis recovery.

Jills Story

I was a normal 49 year old woman with no health problems. Out of the blue one day I woke up and my arms had a strange, rubbery feeling and I thought perhaps Id slept with my arms in some kind of awkward position and dismissed it, thinking it would just go away. By the next morning I could not use my arms at all. I could not lift them or make them function normally. I was convinced I was having some kind of stroke. I work in a medical office and my coworkers assured me this was not a stroke, but more likely some kind of disc problem in my neck. I could not dress, brush my teeth, write or drive. My daughter took my to my primary care physician who also felt this must be some kind of neck problem and ordered an MRI, which I had done immediately. While awaiting the results over a period of days I was gradually able to use my arms again, but I had absolutely no feeling in my lower arms and hands. I could not differentiate between hot and cold or textures. I was directed by my primary care physician to see a neurosurgeon due to some kind of inflammation in my neck. By the time we got to see the neurosurgeon I had almost normal use of my arms and just residual numbness in my fingers and parts of my arms. He was very concerned and told me I did not have a disc problem in my neck at all he felt this was an autoimmune disease and alluded to Multiple Sclerosis as his guess at what was the cause of my symptoms. Of course my husband and I were stunned I expected a course of physical therapy and ended up leaving his office thinking I had MS. Many tests followed including more MRIs with and without contrast of my neck and brain as well as an EMG, chest xray, bloodwork and spinal tap. All of this was normal and showed no signs of MS. The only abnormality was something in my bloodwork which suggested sarcoidosis, but even this was eventually ruled out. Then came an AIDS/HIV test also normal. In the end I was told I had an episode of idiopathic Transverse Myelitis that they had no idea what caused it and I was told that whatever symptoms I still had after three months I would probably have forever. I was told I needed to have steriod infusions which I refused. I am now 51 years old and my only residual symptoms are numb fingers on both hands (only my ring fingers and pinky fingers at this time) and patches of numbness on my palms and lower arms, bilaterally. Looking back I can see several warning signs that I missed because I had never heard of TM. Just prior to the episode of TM I had what I thought was a bladder infection but no antibiotics seemed to work and my urologist told me I was retaining about 5 oz of urine even after I thought I had emptied my bladder. This is apparently a hallmark of TM. Also right before I had the episode I had sore spots on my tongue which were quite bothersome viral infections can also be a stepping stone to TM. I have really learned to live with what happened but to this day people look at my like I am crazy when I tell them about the day I woke up and my arms did not work. Most have never heard of TM. Thanks for letting me share my story and read the stories of others with TM.

Mandys Story

My name is Mandy. Im 36 now. In March 06 (aged 32) I woke with what I can only describe as fizzy feet! I had a small fizziness sensation in both feet. At the time I was working at Aldi supermarkets as a Store Deputy, running my butt off! I loved my job! I went to work that day thinking I had trapped a nerve as my job involved heavy lifting, but as the day went on (and over the next 2 days) I went numb up to my middle torso! I still continued to work! I really think that I was in denial, as I was super Mandy!! Normally, nothing was too much for me, except this was ( The next day was Saturday and my sister came to visit with her 2 kids. I just burst into tears as I told her I couldnt feel my legs properly. I had an appointment to see the Doctor the following Tuesday, but my sister was having none of it. She called NHS direct, and a Docter rang me back! Next, I went to a walk in centre to see a Doctor there who did some initial neurological tests. He said I needed to see a Neurologist but there wasnt any on call on the weekends! I had managed ok at home and so the Doctor sent me back home and told me to get in touch with my GP as soon as I could. My GP thought my numbness was a side effect from some medications I had been taking for over a year. The medication is called Atenolol. I had been taking it for a fast heartbeat an panic attacks. He thought the problem was the medication, or something called TM (Transverse Myelitis) which was a total inflammation across the whole of the spinal cord! He said that was very rare. I stopped the tablets for a week with no improvement. I went back to GP who then sent me to the medical assesment unit at the Hospital. I got there at lunch time and by 4pm I was in the MRI machine! The MRI took 1hr and 20mins! They scanned my spine and my neck and then my brain.

The next day I went back to the hospital and they gave me steroids by IV. 2 days later, they managed to squeeze me in to see the Neurologist. The Neurologist showed me the MRI of my Brain on his screen. It had white spots scattered through it, which he told me were typical of the disease. At that time, he told me I had experienced an episode of De-Myelination and if I had anymore it would be called Multiple Sclerosis! Next, I went blind in my left eye in the July that same year. Then the TM came back in October of the same year. Id rather blot that year out now as it was so scary the way one thing after another was happening to me. It just wasnt fair. I didnt understand what was happening to me. Id been so fit and healthy or so I thought. I got the diagnosis of MS on the 13th of May 07. They say you never forget the day you got diagnosed! I havent returned to work since I left that Friday in March 06. I feel bad about that, but I have been left with altered sensation in my feet, and I feel like Im burning on my upper thighs and around the Groin area. When I walk too far, my skin feels as if it is bubbling around the Groin. It is hard to explain!

I have been told I have been very lucky to have escaped being permanently disabled, but I also think I havent totally gotten better either! I have learned about a new vascular disease called CCSVI (chronic cerebral spinal venous influx). The Verecous Veins blood pools in the head around the brain and there is too much Iron building up in the Blood Brain Barrier. Therefore, the body attacks the excess Iron which causes MS. I have my name down for the scan to see if my jugular veins are blocked or twisted, so fingers crossed one day soon Ill feel like good old super Mandy!! Thanks for sharing, Mandy (Super Mandy!)

Kates Story

My name is Kate, and Im 24 years old and have just recently been diagnosed with what they think is Transverse Myelitis. Im a student, and had been studying for long, long hours in order to prepare for my finals, and had noticed that my butt felt numb. I figured it was just because Id been sitting on it so much, and disregarded the feeling. The next day, again I sat for long hours, but started to notice when I went to the bathroom that things felt just a little off again I figured, hey.. Im studying a lot, Ive really got to start getting up to walk around more often. It wasnt until the third day that I noticed I had complete numbness in my glutes and groin. I figured I would see how it was the next morning after Id slept on it and it was the same. I have a degree in human physiology and knew that my numbness followed what they call dermatomes and decided to have a look online. Of course I know that you can scare yourself silly looking online, but I wasnt about to go to my doctor unprepared, I wanted to be able to advocate for myself. I found a couple things that suggested either lumbar disk involvement, or cauda equina syndrome. Either way I needed to be looked at right away so I called my GP and got in that day. He saw me and said the he suspected lumbar disk involvement, but that it could be cauda equina and said hed order and MRI and some blood work ASAP. He told me that if it got worse, or if I lost bowel or bladder control I needed to go to the ER. I felt like a ticking time bomb I was just supposed to go on living my day, meanwhile if I did have cauda equina syndrome it has to be relieved surgically within 48-72 hours or the damage can be permanent. I waited one day for the MRI appointment, but the numbness had spread down the backs of my legs, so I went to the ER.
THE ER

The doctor I saw first swore up and down that I didnt have cauda equina syndrome because I wasnt in any pain. He guessed that I had Guillain-Barre Syndrome theres no test for it, its self limiting, and Id had both pneumonia and a cold sore within the past six weeks. He was going to send me home without having conducted a single test he deemed that my case wasnt severe enough to warrant an MRI. I told him that I wasnt comfortable going home to just wait and see because if I did have something mechanically wrong, I was going to be doomed to having no sensation for the rest of my life. I get that I hadnt lost any function, but at 24 being

told you may never have a sex life ever again is not something you want to be told. He decided to order the MRI and I waited in the ER until it could be conducted. That doctor transferred my case to another when he went off shift, and this doctor discussed with the radiologist on call, who said there was nothing mechanical that could be responsible for my symptoms, so I should go home. He did get me an appointment for two days later with a neurologist who would see my case.
THE NEUROLOGIST

My neurologist took my case after hours, and opened up my MRI to review them with me. He had JUST opened the MRI when he said oh dear, whats that?. My heart practically stopped beating. There was a discoloration next to my spinal cord, at the level of L5-S1. I asked what he thought it was and he told me he wasnt sure, but that it wasnt clear as the radiologist had suggested. What were the possibilities? MS Cancer or inflammation. He strongly suspected inflammation, so he ordered a repeat MRI with contrast, since the first one wasnt the best viewing for what he needed, and he wanted my entire spine and brain. I thought I would wait months for this, and said as much. He told me that they should have seen this the first time around, and ordered the MRIs then, he was not going to wait months, at the very most I would wait weeks; his office called me the next day with an appointment for two days later. He also prescribed me 1000mg of prednisone per day, for four days. He told me: youre going to bring this to the pharmacist and theyre going to ask are you sure? and then theyre going to look at it funny, and theyre going to want to call me. Tell them yes youre sure, that you were told this would happen and that they can call to confirm if theyd like. I called my mom and told her what he had prescribed and she was shocked normal doses of prednisone are 25-50 mg, 100 mg is high 1000 mg is unheard of. My moms best friend is a long time physician and thought my mom had to be mistaken. This really made me wonder what I was putting into my body but I trusted my neurologist whole heartedly he was really fighting for me here! He had to go up against the radiologist for the third time in one day regarding my results, and went to the chief of radiology himself to discuss the problem. He got me an MRI in TWO DAYS which is unheard of. Im incredibly lucky

After three days on the prednisone I had my MRIs and two and a half hours later they had the images they needed and again I was sent home to wait until my follow appointment two days later. When I got there, my neurologist again pulled up my MRI results and looked at them with me. He showed me the place where my previous spot had been, and that spot was gone! Which he said ruled out cancer or MS I was elated on one level, and disturbed on the other. At least those diagnoses were something tangible that I could learn to live with or fight, this left me with no answers. My mom and my boyfriend who were with me at this appointment started to ask the questions that I was too overwhelmed to ask. What causes this? What are the possible conditions that can cause theses random spots of inflammation? When pressed, my neurologist said he thought it was transverse myelitis. I didnt know what this was, it hadnt come up in my research. He told me he didnt want to minimize my loss, but that I was extremely lucky I had lost NO function, only sensation. Had my lesion occurred an inch higher Id have lost bowel and bladder

control. Some people experience it at level C5 and experience vision loss. I will admit that this was small comfort at the time, but now with some perspective I realize how lucky I am.
AFTER DIAGNOSIS

Im still dealing with what I think are the side effects of the prednisone the pain, the muscle spasms along my spine, and my numbness is still there. Im starting to wonder though, due to the stories on your website whether the symptoms I have are due to CCSVI. It would be a mild case at best, because Im lucky and my symptoms are like a 1 on a scale of 0-10, but its something to discuss with my neurologist! I never would have come across it if I hadnt been looking for information on Transverse Myelitis and found your board. I decided to share my story because there are going to be more people like me, who decide to google it before going to their doctor with their complaints I want them to know that not all cases are severe, and just because yours doesnt fit the normal profile, doesnt mean you should stop fighting for answers. Hold your health care team accountable for your well-being, it is their job to find out what is wrong with you, and you can be an amazing asset to them by knowing your body, and advocating for yourself. I would never have gotten that MRI if I hadnt insisted on ruling out cauda equina in the ER, which means I never would have seen my neurologist who ordered further testing. Arm yourself with knowledge, and know your body, it can save your life!

Stephs Story

HOW IT BEGAN

I woke up one day in March 2006 thinking the day would be like any other day. It was a normal day until I felt a very odd sensation while shaving my legs. The sensation that I felt when I touched my leg felt odd. Thats really the only way that I can describe it. I didnt think much of it at the time. On thursday (about two days later) I starting experiencing pain. The pain was most intense in my left hip area. I also had pain in my lower back. It was not a sharp or unbearable pain, but it was extremely uncomfortable. I packed up and left work early that night. On friday (the next day) it was even worse. The pain was not bearable and I had a difficult time sitting in my chair for longer than fifteen minutes at a time. The pain was less intense when I walked around. I packed up and left work at noon that day. At this point I was concerned that something might be wrong, but I thought some rest would solve the problem. On Saturday I noticed that the odd sensation in my leg was actually numbness. The numbness had increased by this time. My left leg was numb, and my right leg felt normal. It was extremely painful to sit in any position. Laying was the most comfortable, followed by walking or standing.

FIRST TRIP TO THE HOSPITAL

On Monday I was in an extreme amount of pain, so I went to the hospital emergency unit. The doctors conducted a medical history, physical examination, and multiple urine tests. This process took 8 hours, and then the doctors sent me home with a referral to a Neurology clinic. I was told the appointment would take a couple months because they were backed up. The physicians recommended Tylenol for the pain. Tylenol did not help even a bit. I spent an entire week in pain. I left work early on some days, and I was absent on other days. The pain prevented me from sleeping each night, and I was averaging about 1 hour of sleep. I felt hopeless. I could feel that something serious was wrong with my body, and I felt that there was nothing that I could do about it.
SECOND TRIP TO THE HOSPITAL

The following Monday (1 week since the last visit to the hospital), I woke up and realized the numbness had risen to my chest area, on the left side of my body. It became difficult to feel any sensation in my toes, and it felt odd to walk because the sensation in my leg was nearly gone. At this point, I packed a bag and went to the hospital emergency unit again. I stood in the waiting area (too painful to sit) for about 2 hours before I could see a physician. Again, the physicians conducted a medical history, physical examination, and urine tests. After that, some blood tests were taken. Fortunately, there was a neurologist on-call at the hospital, and after conducting numerous tests, he suggested that an MRI be conducted. At this point I was admitted to the hospital.

I waited the entire night in the hospital hallway for an MRI. It finally happened at 4am. After taking the MRI images, they repeated the MRI with contrast, which allows them to obtain more information about the spine. The contrast involved injecting dye into my blood so the pictures provided additional information. They also did a brain MRI. The entire process took about 80 minutes.
TM DIAGNOSIS

Shortly after the MRI, I was moved from the hospital hallway into a more comfortable room. This is when the neurologist came to give the news. I was not surprised when the doctor said I had transverse myelitis. I had spent hours researching my symptoms during the previous two weeks, and transverse myelitis was one of the things that I had read about. At the time, however, I was not aware that transverse myelitis is such a serious disorder. My lesion is located at the C5/C6 level. MY TREATMENT

I was treated with 1000mg of injected methylprednisolone that morning, and again that evening. I received another 1000mg/day for the two days following. The doctors performed frequent physical examinations, and my symptoms slightly improved after the second or third day. I was released from the hospital on the fourth day, with a prednisone prescription. The purpose of the prescription was to taper off from the high dose intravenous methylprednisolone.
MY RECOVERY

I rested for a day, and then foolishly returned to work the following day. This was entirely too fast, and I would not recommend it to anyone. I really pushed myself too much too fast, which resulted in too much pressure and too much stress. After about a month I felt 80% recovered. The most difficult issue was the constant aching back pain that I still experienced while sitting, especially for extended periods of time. I had an MRI done about 3 months later and the neurologist reported that the lesion had slightly decreased in size.
MY ONGOING TREATMENT

It has now been about two and a half years since my TM attack. More information about my current condition coming soon.

Roxs Story

HOW TRANSVERSE MYELITIS VISITED OUR LIVES

Life had treated me well. I had just married a wonderful man. I had a fantastic job and colleagues. Everyone in my family was doing well. Was that a dream? On the first Saturday of December 2008 I woke up with an immense pain in my left arm and pins and needles in the left side my body and all the way down the shoulders. I was rushed to hospital immediately. The doctors were puzzled. It did not look like a stroke or MS. I was told to wait a few days as I might have pinched a nerve. The following day I woke up with unbearable pain in both arms. The pins and needles had already spread to the right side of my body. So I was rushed in an ambulance yet again to emergencies. There were three doctors around me looking puzzled. They had no idea what it was. They thought it was not serious though and told me to talk to my GP the following day for her to refer me to a neurologist. My GP laughed at my request, could I see a neurologist some time this week? She said that the waiting list in my area to see a neurologist was at least six months. Then I remembered one of my wedding presents. An extensive private health insurance coverage. So through the insurance

my husband arranged to see one of the best neurologists around. He could only see me in 10 days time given his tight agenda. We phoned several hospitals and that was the earliest any neurologist could see me.
DIAGNOSED WITH TRANSVERSE MYELITIS, NOW WHAT?

This bright neurologist told me I think you have Transverse Myelitis (TM). It is not acute, it has probably reached already its peak and it is such a shame you were not treated immediately with steroids in your first visit to a hospital. He ordered an urgent MRI (brain and spinal cord with contrast), spinal tap, evoked (visual) potentials, aquaporine-4, ANA antibodies and a long list of blood tests to try to establish the cause of TM or whether there was something else that could mimic TM. All tests confirmed Transverse Myelitis, an inflammatory demyelination of the spinal cord which had affected me at the c3-c5 level. My brain was clear, I had no o-bands, the evoked potential tests were normal. The other tests could not determine the cause of TM but it was clear there was inflammation going on, likely to be caused by a virus I got weeks before in one of my trips to Africa. I also had some of my liver enzymes elevated, especially the serum Gamma GT that was at 200, when the normal range up is to 50. Three weeks later the pins and needles that I had 24 hours a day disappeared, as did the pain in my right arm. I remained with hypersensitivity in my left arm and something nastier appeared: tonic spasms. This is a sort of electricity building up through the hands, arms, trunk and legs that felt like an electroshock that would last for about a minute. The spasms were triggered by movement and I would have at the very least 200 spasms per day. That prevented me from doing any sort of daily activity that involved movement. I also developed a .l.hermitte. neck, which feels like a sort of electricity along the spinal cord when I bended my neck. In addition to that I had chronic fatigue. There were days I did not have energy at all to get up from bed. I was put on a strong doses of steroids and anti-seizure medication to control spasms. More tests were carried out. I had a liver biopsy, CT scans and another long list of blood tests to rule other viruses, autoimmune diseases, tumors and other rare conditions. The tests revealed nothing. Then I developed unbelievable strong migraines on the left side of my head. This was thought not to be related to TM or medication. My doctors tried putting me on different medication to control the spasms and pain but still the headaches did not go away.
WAS TRANSVERSE MYELITIS HERE TO STAY?

Fourteen months had passed by. During that time I had been pretty much house-bound. My symptoms were stuck. I could not walk at a fast speed because that would trigger spasms. Running was certainly out of the question. I would walk three quick steps and the spasms were triggered in the rest of my body. The spasms were so strong that I would lose control of my arms and my legs will get paralyzed. My headaches became worse, especially when lying down. I had a third MRI scan (brain and spinal cord with contrast) which showed I had no new lesions and no deterioration in my old one.

So my ongoing symptoms were attributed to be residuals of TM. Based on my neurologist.s report my GP told me to come to terms with my condition, as further improvements seemed to be unlikely. I was very sad that my life changed so much over night. I was about to take the advice of my GP, but something inside me told me not to give up. I started reading widely medical journals and health news about ongoing research in Transverse Myelitis and other closely related diseases such as Multiple Sclerosis (MS). I found lots of information about stem-cell, as well as remyelination research programmes. But these therapies seemed to be in very early stages and not readily available.

CCSVI AND THE LIBERATION TREATMENT

During my daily search into medical therapies I came across the work of Professor Zamboni. He had discovered a congenital vascular disease which he labeled as Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). People with CCSVI have their veins in the neck and/or chest narrowed (stenosed), twisted, or blocked which affects the drainage of the brain and spinal cord. In December 2009 CCSVI was recognized as a new type of truncular vascular condition by experts of 47 countries in the international union of phlebology. Further research suggests that people who have Multiple Sclerosis are very likely to also have CCSVI. Research by the University of Buffalo have also found CCSVI in about 25% of healthy individuals and about 40% of those with neurologic diseases. A small-pilot study by Professor Zamboni revealed that treating CCSVI with a balloon angioplasty (a treatment also known as the liberation treatment) seemed to cut the chances of relapses and relieve some of the symptoms of MS patients, including headaches, fatigue and spasms. Exactly the same symptoms that had tormented me, so I became interested in finding out more. Was it possible that I suffered from this vascular disease? I read all peer-reviewed journal publications to date on CCSVI. Since Im not a medical doctor to judge whether this promising research venue could be relevant for my condition we asked for the advice of a friend, who happens to be a neurologist and director of a big hospital specialized in MS. This neurologist told us that the research on CCSVI seems to me a promising therapy for those with MS and CCSVI, but it is still at early stages to be recommended outside of a clinical trial. Furthermore, no research had been conducted directly on CCSVI and TM so this friend was not sure whether this therapy could help me at all. I was advised to talk to a very experienced vascular doctor (who had already treated several MS patients for CCSVI) to enquire further about CCSVI, how it is tested and treated and most importantly about the risks involved.
DO I HAVE CCSVI?

My family and I spoke to this experienced vascular surgeon. After we assessed the risks involved of the various types of tests for diagnosing CCSVI, I opted to have a venography. This test

revealed that my azygous vein, a vein that drains the spinal cord, was 100% blocked. My left internal jugular vein was narrowed (stenosed) more than 90%. So I was diagnosed with CCSVI. My vascular surgeon suggested to treat these veins with a balloon angioplasty, regardless of whether that would have an impact on my neurological condition. I had the balloon angioplasty in March 2010.
MY ROAD TO RECOVERY

Immediately after my balloon angioplasty I felt a difference. The daily migraines that had tormented me for months stopped. I noticed a big difference in breathing. I never felt my breathing so good (not that I knew I had problem with it). A few days after the angioplasty I asked my neurologists to have a further look at my medical file since CCSVI seems to be strongly correlated to MS. According to their assessment there is no indication at all to suggest I have MS. Furthermore, I was told that my chances of developing MS were low as I don.t have lesions in my brain, nor o-bands and because I was born and raised near the equator and no-one in my family has ever suffered from MS.
A SECOND OPINION

My improvements after the angioplasty have continued. My chronic fatigue faded away within weeks. My spasms practically disappeared two months afterwards. I stopped taking anti-spasm medications three months after the angioplasty. The pain I had in my left arm had decreased considerably. I started to feel almost completely recovered. However, I was still puzzled as to why a TM patient like me might have CCSVI. So I sent copies of my medical file to two vascular surgeons and neurologists who have not been involved in my case before for a second opinion. These doctors concurred with the diagnosis. Im a patient who happens to have two rare conditions, TM and CCSVI. The good news, is that after treating CCSVI, many of the symptoms that tormented and that had me house-bound disappeared. I hope that this stays this way. For further information on CCSVI you can see (http://ccsvialliance.org).

Roses Story

HOW IT BEGAN

On May 15, 2007, I was having a normal Sunday evening at home, when after working on my laptop for a few hours, I decided to go to bed (at 10:30pm). Once I put my feet on the floor, after having them up on the coffee table, I noticed my left foot had fallen asleepreally badly. But since it was late and I had to get up at 5:30a the next day, I figured Id just sleep it off. The next

morning I noticed my right foot was now asleep. Odd, I thought, pins and needles isnt contagious as far as I know.it was much milder than the previous night so I decided to ignore it and get on with the morning. By the time I got to work I noticed both legs were now feeling rather odd and my left leg was beginning to hurt. Tuesday rolled around and I was clumsier than usual, bumping into things and dropping things. My pins and needles was intensifying and walking was becoming difficult. On Wednesday I decided to tell my boss, not my immediate boss, who was home with a terrible fever and migraine, but my COO. He told me it was cool if I felt I needed to go to the doctor or hospital..just to let him know when I was leaving. I had called my Back doctor, thinking I must have ruptured a disc or something. (The previous Nov. 06 I had a set of facet injections to my lower spine to handle some severe pain in my lumbar spine.) On Thursday, I was much worse, I called the doctors office again, and was told he would not be available until Monday, I then panicked and went to the ER by 3pm that afternoon.
THE ER

After giving the attendings my back history, they felt I was on the right track and NOT an emergency patient, thus no MRIs, but did get a hold of my doctor so I could have a steroid pill pack for the next 7 daysto help with any swelling. (Apparently that was a lucky move because later research I did pointed to early treatment for Transverse Myelitis with steroids to be a good thing.)
FINDING THE TRUTH

I finally got in to see the back specialist the following Monday and he was convinced it was my herniated discshe mentioned they were nothing to write home about but we could do a new set of injections for the painnevermind that I was not in pain but experiencing numbness throughout my pelvis through to my toes I was not convinced and decided to ignore him and try to find another specialista joyous hunt through my insurance companys web site to find another doctor who would see me sooner than 1 month out. My boss finally found out and was furious with me, for not telling him and with my spinal doctor. He did some recon of his own and found me a specialist that would see me that Friday. He only did a consultation with me but after reviewing what I had (current Lumbar MRI, last Novs Thoracic MRI and an Xray he did of my neck) his diagnosis washe did not know what I had. I did have the herniated discs in my Lumbar and Cervical areas (based on my age, having a baby, and job). He said the other symptoms were neurological and I needed to see a Neurologist as soon as I could. He gave me the name of someone he felt was the best. The recommended Neurologist was dealing with a family emergency and would not be able to see me for another 5 weeksout of the question for me. Once again, back to the insurance web pages to hunt for a neurologist. Picked at random I landed on Dr. Daniel Rovner who was available that Friday (now Jun. 1st). Much to my surprise he already had an inkling of what I had but decided to do the Thoracic and Cervical and Brain MRIsone at a time so as not to piss off the insurance company. He also ran a Spinal Tap and comprehensive blood tests (testing for everything from STDs to viral issues) . The blood work was normal, the Cerebral Spinal Fluid (CSF) showed tell tale signs of an infection in my cord. Transverse Myelitis was the diagnosis.

He said I was lucky that it did not paralyze me in the first day. He was confident (hopeful?) that this would be a one time occurrence and I would recover my movement and most of the sensory issues would go away in about 1.5 years. Since I have constant pain in my mid-back area (brastrap area), he determined I have a hidden lesion there causing the over-stimulation issues in my pelvis and legs. (Dr. Rovner later had me read a book in which the author was a patient of his..it helped me a lot: The Best Seat in the House: How I woke up one Tuesday and was Paralyzed for Life)

So I could not walk more than a block (or sometimes half) without my legs erupting in an oversensory- vibrating, tingling, inability to feel my legs as normal, like jello mess that takes 45min1hr to return to a semi-normal state of constant vibration-tingling-minor-over-sensory feelings from my pelvis to my toes. I discovered, after trying swimming for two weeks.cant do that, tried just sit-ups and minor arm work at the gym..cant do that, then I was hit hard when I overheated at work on Sept. 20, 2007..it sent me to the hospital and pointed out that I need to rest. I was off work for about a week when all this first hit, but that did not really allow for me to deal with the total future implications of this and my mental health. After careful discussion with Dr. Rovner and my husband, Morgan, I decided to take Oct. 2007 off.
OPTIC NEURITIS

Well, the next week, the week of prepping back-up assistance for my boss, I discovered I had an odd headache that triggered a 3-day migraine. By the end of that week I was fried to the max. I made an appt. with my Optometrist since my left eye was now bothering me and were the pain in my head decided to rest in. I had a strange sensation of something in my field of view and was constantly looking at my sunglasses expecting to find a smudge..but nothing was there. I felt pressure from my nose to my eye and it hurt to move my eye. The following day from my visit with the eye doc I began to lose the ability to see certain colors and all colors were fading, I had noise in my vision (kind of like this but lighter and more gray ) and the pressure subsided but the pain was still there. I called Dr. Rovner and much to my dismay his initial reaction wasDamnnot something I really wanted to hear. Thus my new diagnosis of Devics Disease (Neuromyelitis Optica). A much worse diagnosis in my opinion sigh! I underwent daily IV treatments of Solumedrol that Tuesday through Friday to counteract the loss of vision due to an inflamed Optic Nerve. Double sigh.
CURRENTLY

Those were scary times, my vision has since healed but now I have migraines on my left side and random other issues. I still have all the buzzy/fuzziness in my legs from my hips to my toes, walk like a duck, and have difficulty going up startssomething that will never change since I have healed as much as I will (per the good doc). I now take Rebif for a diagnosis of MS after the ON

attack but am looking towards being treated for CCSVI. I was scanned recently at the Hubbard Foundation and discovered to have narrowings and refluxing flow in my internal jugular veins and narrowings in my azygos vein. I am trying to convince a local FSIR to treat me. He has gone to a CCSVI symposium in NY and is meeting with Dr. Scalfani and also sitting in on a few venoplasties. Hopefully he will return with an interest in treating me. Otherwise I will be going back to San Diego to be treated by the Hubbard Foundation. Please take a look at Roses blog where she is updating information prior to CCSVI treatment: Roses Blog

About the spine

The spine is central to the skeletal system. It supports the head and encloses the spinal cord. It is made up of 33 vertebrae which are classified into five regions: 1. 2. 3. 4. 5. Cervical vertebrae there are 7 cervical vertebrae in the neck region. Thoracic vertebrae there are 12 thoracic vertebrae in the upper back region. Lumbar vertebrae there are 5 lumbar vertebrae in the lower back region. Sacral vertebrae the 5 sacral vertebrae are fused together to form the sacrum. Coccygeal vertebrae the 4 small coccygeal vertebrae are fused together to form the coccyx or tailbone.

Running down the centre of the spine is the spinal cord. The spinal cord is made up of millions of nerve fibres. These nerves are the communication link between the brain and all other parts of the body. Messages about feeling or sensation are sent to the brain via the spinal cord, and the brain sends movement or functional messages to the body, also via the spinal cord. The diagram to the right illustrates the various levels of the spine and the extent of paralysis which occurs to the body when the spinal cord is injured at a certain level.

Transverse Myelitis Treatment

Transverse Myelitis Treatment

There is currently no effective cure for transverse myelitis, and very few experimental treatments in the news. However, there are many different treatments that are offered to patients with transverse myelitis:

treating any underlying cause (if known). halting the progression of the damage to the spinal cord learning to cope with the physical and psychological issues that result from living with new limitations and challenges.

Most transverse myelitis treatment aims to manage and alleviate symptoms of the disorder. The symptoms that result from transverse myelitis are generally neurological in nature, such as nerve pain. In addition to pain and physical disabilities, patients must learn to cope with the psychological and emotional impact of living with new limitations and challenges. In some cases, patients require treatment and counseling for depression. Most experts agree that treatment for transverse myelitis should generally begin as soon as possible.

Which transverse myelitis treatments are used at the initial onset?

The initial transverse myelitis treatment can depend on a number of factors such as symptoms, test results, progression, etc. In idiopathic cases of transverse myelitis, a high-dose of intravenous corticosteroids are often administered. Sometimes, the treatment is followed by plasma exchange therapy. The effectiveness of both treatments is uncertain. In almost all cases, bed rest is often highly recommended during the initial days and weeks after onset of the disorder. Below are some common initial transverse myelitis treatments:

Intravenous steroids (corticosteroid medications): This treatment is believed to help reduce the inflammation in the spinal column. Plasma exchange therapy: This treatment is believed to remove antibodies that are involved in the inflammation. Pain Management: This treatment aims to provide comfort to the patient. Other Treatments: There are additional treatments that have been prescribed for transverse myelitis patients.

CORTICOSTEROID MEDICATIONS

Physicians often prescribe a high dose of intravenous steroids immediately following the onset of symptoms or diagnosis. These medications can include those such as methylprednisolone or dexamethasone. Corticosteroid medications are believed to work by reducing the activity of the immune system to prevent the immune system from attacking the myelin of the spinal cord. Of course, this treatment would only be selected by physicians who believe that transverse myelitis is partially or fully autoimmune in nature. Clinical studies are few, or non-existent, in the investigation of the impact that corticosteroid medications have on the course of transverse myelitis. No studies have provided evidence that this treatment is effective. After administering this treatment, it is believed by some that about half the people with transverse myelitis will recover within six months. This method is generally administered for patients with acute transverse myelitis. Intravenous steroids are usually prescribed for between three to five days. The patient is often prescribed oral corticosteroid medications to taper the patient off the high dosage. Some patients are prescribed oral corticosteroid medications for longer periods of time. However, the decision to continue steroid medications or to add a new treatment is usually dependent on the MRI results at the end of the high dosage corticosteroid treatment.
PLASMA EXCHANGE THERAPY

Plasma exchange therapy has shown some positive results for transverse myelitis patients. Plasma exchange therapy is generally chosen for those with moderate to severe TM who dont show much improvement after being treated with intravenous steroids.
PAIN MANAGEMENT

One of the first symptoms reported by patients is pain. The initial pain management generally includes nonsteroidal anti-inflammatory drugs. Nonsteroidal anti-inflammatory drugs can include:

aspirin ibuprofen (e.g. Advil, Motrin)

naproxen (e.g. Aleve, Naprosyn)

These drugs are helpful in relieving pain, and reducing inflammation. Patients can also be prescribed pain medication for long-term treatment, after the initial treatment is complete.
OTHER TRANSVERSE MYELITIS TREATMENT OPTIONS

Some patients have been treated with intravenous cyclophosphamide. Cyclophosphamide is a drug that is often used to treat lymphomas or leukemia. When physicians choose to treat with cyclophosphamide, an experienced oncology team is involved in the administration of the drug. Patients that experience recurrent TM are sometimes treated with chemical agents that modify immune response. These treatments can include methotrexate, azathioprine, and mycophenolate or oral cyclophosphamide.

What happens after the initial treatment of transverse myelitis?

Following initial treatment, It is critical to keep the patients body functioning. There is a chance the patient can experience complete or partial recovery during this time. If the respiratory system is involved, the patient may be placed on a respirator. Patients that are showing acute symptoms (such as paralysis) are generally treated in a hospital or rehabilitation center. If a paralyzed patient begins to recover limb control, long term physical therapy can be applied to improve range of motion and strength. In almost all cases, bed rest is often highly recommended during the initial days and weeks after onset of the disorder.

What therapies are used for long term transverse myelitis treatment?
Transverse myelitis treatment is generally tailored to fit the needs of the patient. Each patient can have different levels of disability, different levels of pain, and different symptoms. Below is a list of both common and less common long term treatments of transverse myelitis:

Pain Management Physical Therapy Occupational Therapy Depression treatment and counseling Accupuncture

Massage Therapy

PAIN AND SYMPTOM MANAGEMENT

Physicians may prescribe medication for long-term treatment depending on the patients symptoms and any complications the patient may be experiencing.

Some patients experience painful muscle spasms, and will therefore often be prescribed antispasticity drugs. In transverse myelitis, the nerve impulses from the spinal cord are often scrambled and misinterpreted by the brain as pain. Painkiller medications can also assist patients with easing pain discomfort. Some physicians prescribe anticonvulsants to relieve the pain and discomfort caused by transverse myelitis. Below is a list of medications that are often prescribed for pain and discomfort in transverse myelitis patients:

gabapentin (Neurontin) pregabalin (Lyrica) baclofen (Kemstro and Lioresal) prednisone

PHYSICAL THERAPY

Physical therapy treatments helps patients build muscle strength and recover coordination. Physical therapists recommend and teach patients to use various assistive devices. Assistive devices can include things such as wheelchairs, canes, and braces.

OCCUPATIONAL THERAPY

This type of therapy assists transverse myelitis patients with learning new ways to perform day to day activities, such as bathing, cooking, and housecleaning.
DEPRESSION TREATMENT AND COUNSELING

Depression can be quite common in patients with spinal cord disorders. In general, depression is common in individuals suffering from any type of disability. Similar to any depression treatment, patients are generally treated with both medications and counseling.

Common depression medications can include:

Selective Serotonin Reuptake Inhibitors class antidepressant medications. These can include medications such as: paroxetine (Paxil), fluoxetine (Prozac), escitalopram (Cipralex), citalopram (Celexa), fluvoxamine (Luvox), and sertraline (Zoloft) Serotonin Norepinephrine Reuptake Inhibitors class antidepressant medications. These can include medications such as: venlafaxine XR (Effexor XR) Tricyclic Antidepressants such as amitriptyline (Elavil), desipramine (Norpramin), imipramine (Tofranil), maprotiline (Ludiomil), and nortriptyline (Nortriptyline) MAO Inhibitors class antidepressant medications. These include medications such as: moclobemide (Manerix), phenelzine (Nardil), and tranylcypromine (Parnate) Tetracyclic antidepressants medications such as mirtazapine (Remeron)

If you, or someone you know, is suffering from depression, please seek advice from a physician as quickly as possible.
ACCUPUNCTURE

Some individuals living with transverse myelitis have had success with accupuncture. There is no evidence that this therapy works, but it has been deemed successful by some individuals.
MASSAGE THERAPY

Some individuals living with transverse myelitis have had success with massage therapy. Although the therapy probably does not help the condition itself, it is quite possible that it relieves other symptoms that are triggerred by symptoms of transverse myelitis. For example, leg weakness can cause individuals to walk differently and put strain on parts of the body such as the back or hip. Massage therapy has been deemed successful by some individuals with transverse myelitis.

What day to day adaptations are required for a person with transverse myelitis?
There are numerous physical, psychological, and emotional adaptations that a person with transverse myelitis can struggle with on a day to day basis. The level of physical adaptation is generally dependent on the level of remaining disability. However, the level of psychological and emotional adaptation can vary from individual to individual. These factors may not necessary be dependent on the level of physical disability caused by transverse myelitis. Physical adaptations are related to learning to live with the disabilities. This can include learning to cope with bowel and bladder control, sexuality dysfunction, inability to control muscles, spasticity issues, mobility issues, pain management, and sometimes the inability to perform basic daily functions such as dressing and cooking.

What new treatments or experimental treatments are available?

Information in this area is currently lacking. There is no indication that there is alot of Transverse Myelitis research happening right now. You might be interested in reading about CCSVI.
CCSVI (CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY)

CCSVI is a condition where there are blockages and/or narrowing of the veins that are supposed to drain the blood from the brain back to the heart. It is currently a popular topic in the news because a large percentage of Multiple Sclerosis patients have been found to have CCSVI, and the CCSVI treatments have been quite successful in some patients. This, of course, sounds very promising for MS patients. How does this relate to TM? Well, a number of patients diagnosed with Transverse Myelitis eventually go on to develop Multiple Sclerosis (or they were wrongly diagnosed to begin with), so this news is quite relevant. Furthermore, CCSVI has been reported in individuals with other neurological conditions, so it is possible that Transverse Myelitis could be one of them. A simple and non-invasive doppler ultrasound test can indicate whether a patient is affected by CCSVI. CCSVI treatment is considered experimental in many parts of the world, and therefore may not yet be available in your area. Keep up to date with CCSVI News and Information. Testing and diagnosis will likely be available in your area soon, and could potentially provide important information to any person suffering from a neurological disorder! Please take a look at the personal experience page where at least one individual with Transverse Myelitis has undergone successful CCSVI treatment.

Transverse Myelitis Symptoms

Transverse Myelitis Symptoms

Transverse myelitis symptoms depend on the location and severity of the inflammation in the spinal cord. Symptoms of transverse myelitis can be roughly categorized into four groups:

Muscle Weakness

Sensory Alteration Pain Bowel and Bladder Dysfunction

Muscles Affected by Transverse Myelitis

The nerves in spinal cord relay signals to various muscles in the body. A lesion on the spine can display various muscle weakness symptoms in patients. Therefore, the muscles that are affected by Transverse Myelitis are generally dependent on the location of the lesion. When there is damage to the spinal cord (such as transverse myelitis), many muscles of the body can be affected because the brain can no longer communicate effectively with other parts of the body. When the spinal cord is damaged, the communication can be mixed up with the muscles that communicate through the spinal cord nerves in that area. Additionally, the muscles that communicate through nerves on the spine below the lesion can also be affected. Therefore, if the lesion is located in the cervical cord, the muscles that communicate through the thoracic, lumbar, and sacral segments are usually affected as well.

Sensory Alteration
Patients often report a large variety of sensory-related transverse myelitis symptoms. These symptoms commonly include numbness, burning, coldness, or tingling. Patients sometimes report that clothes feel uncomfortable due to a feeling of tightness. Some fabrics can also cause patients to feel increased sensitivity when the fabric comes into contact with the skin.

Approximately 80% of transverse myelitis patience report a heightened sensitivity to touch. Some patients report a loss of the ability to feel pain, or loss of the ability to distinguish the difference between hot and cold temperatures.

Pain
Approximately 50% of patients experience pain as one of the first transverse myelitis symptoms. The location, description, and severity of the pain varies from patient to patient. Patients commonly experienced pain in the back area, or a pain that radiates down the legs or arms.

Bowel and Bladder Dysfunction

Transverse myelitis symptoms can sometimes include bowel and/or bladder issues as the first indicator of transverse myelitis. This can sometimes begin as an increased frequency or urge to urinate or defecate. Or, it can begin as incontinence, difficulty voiding, or a feeling that complete evacuation cannot be achieved. Many patients report issues with constipation.

Transverse Myelitis Prognosis

Transverse myelitis recovery varies from case to case. Therefore, it is extremely difficult for physicians to make predictions about the recovery level for individual cases. Generally, the more rapid the progression is, the worse the transverse myelitis prognosis. If a patient experiences intense pain, it could indicate a higher intense level of inflammation.

When does transverse myelitis recovery begin and how long does it last?
Transverse myelitis recovery generally begins between 2 to 12 weeks after the onset of the symptoms. Recovery may continue for up to 2 years. Generally, if there is no improvement within the first 3 to 6 months, the chance of significant recovery is severely reduced.

What level of recovery do most patients experience?

Transverse myelitis prognosis generally varies from individual to individual. However, heres the general prognosis rule:

About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms: These patients regain the ability to walk normally, and experience minimal urinary or bowel issues. About one-third show only fair recovery and are left with significant deficits: These patients can be left with conditions such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence About one third of patients do not recover at all: These patients are often wheelchairbound or bedridden with marked dependence on others for basic functions of daily living

You may be interested in reading about various Transverse Myelitis Treatmentoptions that can aid in transverse myelitis recovery.

Transverse Myelitis Diagnosis

Because the cause of transverse myelitis is unknown, patients are usually diagnosed with transverse myelitis by ruling out the other possible causes of the patients symptoms. Currently, there is no single test or simple way to diagnose a patient with transverse myelitis. There are differing opinions on the best way to diagnose a case of transverse myelitis.

What tests are conducted to diagnose transverse myelitis?

In order to rule out other diseases and disorders, physicians usually review and analyze detailed information about the patients medical history. Physicians must also conduct a physical examination and a number of additional tests. Below is a list of tests that are often conducted prior to diagnosing a patient with transverse myelitis:

Blood Tests: Used to screen for possible viruses or vitamin deficiencies. MRI (magnetic resonance imaging): Provides images of the brain and spinal cord so that lesions can be identified. Lumbar Puncture: Provides information about white blood cell count and immune system activity.

WHAT INFORMATION DOES THE MRI TEST PROVIDE?

MRI tests provide physicians with images of your spinal cord and brain.

Physicians may or may not take MRI images of your entire brain or spine. Depending on your symptoms, the physician may conduct the test in the region where a lesion may be suspected. Lesions can sometimes indicate other issues such as a herniated disc, tumor, or stenosis. Therefore, if a lesion is found, it still does not mean that the patient has transverse myelitis.
WHAT INFORMATION DOES THE BLOOD WORK PROVIDE?

Blood tests can be conducted to screen for numerous diseases and disorders. Prior to diagnosing a patient with transverse myelitis, the following blood tests are often conducted:

lupus HIV infection B12 vitamin deficiency

WHAT INFORMATION DOES THE LUMBAR PUNCTURE PROVIDE?

A lumbar puncture involves removing a small amount of spinal fluid from the spinal cord. It is not a pleasant test, but it can often provide very important information in the diagnosis of transverse myelitis.

The spinal fluid provides information about white blood cell counts. It can also demonstrate any abnormal activity of the immune system.