Transverse Myelitis Information

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TM Information

Transverse Myelitis (TM) is a rare neurological condition involving the spinal cord's inflammation. The inflammation blocks nerve signals from the brain to other body parts, often resulting in a loss of sensation, weakness, pain, and bowel and bladder problems.

TM can affect everyone differently depending on the section of the spinal cord where the inflammation is. However, two individuals may have inflammation at the same sections, but the symptoms they experience may not be the same.


Transverse Myelitis Symptoms

Symptoms of TM are often determined depending on where in the spinal cord the inflammation has occurred. Generally, functions are lost at the spinal segment of inflammation and below as nerve signals are isolated from the brain.

These symptoms develop over hours to several days, including up to one to four weeks. Symptoms reach their nadir (lowest point) within 1-21 days when involving TM. If symptoms reach their nadir before this time, they are likely not due to inflammation.

Pain

Pain is one of the more common symptoms of Transverse Myelitis. Usually, this involves lower back pain, pressure, or sharp shooting sensations down the legs, arms, or around the torso. Pain can also concern the loss of or abnormal sensations in the body.

Loss of or Abnormal Sensations

Transverse Myelitis can cause abnormal sensations in the person's body. Sensations include burning, tickling, pricking, numbness, coldness, or tingling. The medical term for this is Paresthesia, which often occurs in the legs, feet, or toes.

Shooting sensations can occur when the neck is bent forward, stopping when it returns to its normal position. The medical term for this is Lhermitte's Phenomenon.
Many also report a tight banding sensation around the torso, and that area may be sensitive to touch. Sensitivity to touch (allodynia) could also be present where a light touch causes discomfort or pain.

Sensitivity can also be affected when temperature changes, particularly in extreme heat or cold, which can cause further discomfort.

Weakness of Limbs

The main symptom of Transverse Myelitis is the weakness of the limbs. Muscle weakness, which happens in the legs, is more common than in the arms due to inflammation occurring at a mid/lower spinal segment level which does not affect the arms. Whereas all levels of TM inflammation are likely to affect the legs.

Individuals may have partial paralysis of one or both (Paraparesis) of their legs. Weakness may progress to complete paralysis of the legs, requiring the person to use a wheelchair.

Bladder and Bowel Issues

Bladder and bowel issues are caused by the nerve signals in these areas being cut off from the brain. Problems can include feeling the urge to use the toilet, losing control, difficulty urinating or constipation, and inability to fully empty your bladder or bowels. These issues can result in a person using devices to empty the bladder or encourage bowel movements fully.

Other Symptoms

Individuals with TM might also experience fever, headache, and fatigue. Others include muscle spasms, muscle spasticity, and loss of appetite.


Transverse Myelitis Causes

Infections, immune system disorders, and demyelinating diseases can cause Transverse Myelitis. Instances, where a cause is not known are called idiopathic Transverse Myelitis. If a cause is known, this is often useful to guide treatment.

Infections

Infections may cause transverse Myelitis as it often onsets during or after the body has been fighting an infection. Some believe the autoimmune reaction to the infection wrongly targets the spinal cord, causing Myelitis.

Below are some different types of infection which are associated with Transverse Myelitis:

Viral Infections

The viral infections believed to be associated with Transverse Myelitis are:

  • Cytomegalovirus
  • Echovirus
  • Enteroviruses such as poliovirus and coxsackievirus
  • Epstein-Barr
  • Hepatitis B
  • Herpes (including shingles and chicken pox/zoster)
  • HIV
  • Influenza
  • Mumps, measles, and rubella
  • West Nile
  • Zika

Other viruses may also incite an autoimmune reaction that causes TM. 

Bacterial Infections

Bacterial infections associated with Transverse Myelitis are:

  • Actinomyces
  • Bacterial skin infections
  • Campylobacter
  • Diphtheria
  • Jejuni gastroenteritis
  • Lyme disease
  • Mycoplasma bacterial pneumonia
  • Pertussis
  • Syphilis
  • Tetanus
  • Tuberculosis

Parasitical and Fungal Infections

Rarely parasites and fungal infections have been thought to infect the spinal cord.

Parasites associated with Transverse Myelitis are:

  • Angtiostrongyloides
  • Cysticercosis
  • Schistosomiasis
  • Toxoplasmosis

Fungal infections linked to Transverse Myelitis are:

  • Aspergillus
  • Blastomyces
  • Coccidioides
  • Cryptococcus

Immune System Disorders

Some immune system disorders can cause damage to the spinal cord, which causes Transverse Myelitis:

MOG Antibody Disease (MOGAD)

MOG Antibody Disease is a neuro-inflammatory condition where the immune system attacks the MOG cells. MOG sits on the myelin sheath's surface, which surrounds nerve cells in the central nervous system. 

As antibodies mistakenly attack the MOG cells, damage to the nerves they surround can occur, causing inflammation. Usually, the inflammation would take place in the spinal cord to cause TM in an individual.

Neuromyelitis Optica (NMOSD)

Neuromyelitis Optica Spectrum Disorder is an autoimmune disease that primarily affects the eye nerves and the spinal cord due to antibodies targeting the Aquaporin 4 (AQP4) protein.

Multiple Sclerosis (MS)

Multiple Sclerosis is an autoimmune disease that confuses the immune system into attacking the myelin in the brain and spinal cord. An MS attack targeting the spinal cord can make an individual present with Transverse Myelitis.


Transverse Myelitis Diagnosis

The development of symptoms over time is often helpful in arriving at a diagnosis of Transverse Myelitis. Diagnosis is often due to a neurological examination after ruling out other spinal conditions such as those caused by trauma, herniated or slipped discs.

Other procedures used to diagnose TM include an MRI Scan, Lumbar Puncture/Spinal Tap, and blood tests.

MRI Scan

A Magnetic Resonance Imaging (MRI) Scan produces images of the spine by using a strong magnetic field and radio waves. An MRI scan can detect inflammatory lesions of the spinal cord and brain. Lesions in the brain can give ideas to potential causes of TM, such as MS, NMOSD, and MOG Antibody Disease.

You will lie in a long machine shaped like a tube when having an MRI scan. While the scan is running, the device makes much noise. However, the scan is painless, and you will likely be given ear defenders and music during the scan. The duration of an MRI depends on how much of the brain and spine they decide to scan.

Lumbar Puncture (Spinal Tap)

A lumbar puncture (also called a spinal tap) is a procedure where cerebrospinal fluid (CSF) is extracted from the body by inserting a needle between the bones in the spine. CSF also surrounds the brain and can be used to find an infection or other causes of TM, such as MS. The fluid's level of white blood cells and proteins can indicate a reason.

During the procedure, the lower back will be numbed with anesthetic though some people still find it uncomfortable. Others tend to get headaches after a spinal tap. However, lying down after the procedure for at least an hour is said to help. Additionally, drinking plenty of water is also reported to prevent headaches.

Blood Tests

Blood tests can identify certain infections, diseases, and disorders such as HIV, Sjogren's disease, and Lupus (systemic lupus erythematous). Blood tests can also specify a vitamin B12 deficiency relating to TM.

Antibodies relating to neuro-immune conditions, such as MOG Antibody Disease and AQP4 (Aquaporin-4) associated with NMOSD, can also be found in the blood. These antibodies would change the individual's diagnosis significantly as future treatment is likely to differ from an idiopathic TM episode.


Transverse Myelitis Treatment

The treatments for Transverse Myelitis depend on the cause and severity of the condition. Corticosteroids and plasma exchange often treat TM acutely.
After the inflammation has reduced, other treatments can be introduced to deal with symptoms and recovery and as a preventative against further attacks. No cure exists for TM, and each case is likely to differ from another.

IV Steroids

IV steroids often treat Transverse Myelitis by reducing spinal inflammation and calming the immune system. The treatment is administered for 3-5 days using drugs such as Methylprednisolone or Dexamethasone. A course of oral steroids may follow over the next weeks/months.

A continuation of steroids depends on improving the condition during acute treatment. For those patients experiencing another attack of TM, IV steroids will likely be the initial acute treatment.

Plasma Exchange (PLEX)

Depending on the success of the IV steroids, Plasma Exchange (PLEX) may be considered a treatment for those who present with moderate to aggressive forms of Transverse Myelitis.

PLEX works by replacing the plasma in the individual's blood with new plasma or an artificial substitute, removing antibodies and proteins from the patient. The PLEX procedure takes several hours to complete and could take several sessions over a few days.

Preventative Treatments

Transverse Myelitis may be caused by underlying conditions such as MOG Antibody Disease, MO, and MS. In this case, preventative treatments may reduce the likelihood of another attack. One such treatment is IVIG:

IVIG

Intravenous immunoglobulin (IVIG) is a treatment where antibodies from healthy donors are injected into the patient. The antibodies are made by the donor's immune system and help regulate the patient's immune responses.

Antiviral Medication

Healthcare providers may use antiviral medication when a viral infection is believed to have caused the Transverse Myelitis attack.

Symptom Medications

A healthcare provider can use different medications to treat the various symptoms of Transverse Myelitis. A patient could use a ventilator to ensure the individual gets enough oxygen if breathing is affected.

A patient may also use pain-treating drugs to reduce it; depending on the type of pain, they may use different medications to treat it.
Muscle pain has been treated with Acetaminophen, Ibuprofen, and Naproxen. Certain antidepressant medications, muscle relaxants, and anticonvulsant drugs can also treat nerve pain.

Symptoms, including muscle spasms, incontinence, stiffness, sexual dysfunction, and depression, can be treated with medication.

Therapies

Rehabilitation therapy may be necessary for those with permanent disabilities caused by a TM attack. Rehabilitation can take several forms depending on the type of disability involved. In some cases, individuals may have to learn different ways of performing activities to overcome the disability. The therapy aims to increase the individual's independence to create the greatest quality of life.

Pain, weakness, paralysis, bowel and bladder issues, and spasticity are common deficits resulting from TM. These deficits can often make an individual's ability to perform everyday activities more difficult.

Those with lasting defects from TM may consult various healthcare professionals as part of their rehabilitation therapy. As part of the rehabilitation process, physiatrists, physiotherapists, occupational therapists, vocational therapists, and mental health professionals could be involved.

Physical Therapy

Physical therapy focuses on increasing/retaining strength, coordination, and ability to use muscles affected by TM. Treatment can include techniques to control the bladder and bowels and how to use compensating devices such as canes and wheelchairs.

An individual suffering from physical deficits may benefit from seeing a physiotherapist. Therapy will likely come from repetitive movements and activities to regain muscle flexibility and strength. In doing so, treatment may improve the effects of muscle spasticity, weakness, and spasms.

Occupational Therapy

Occupational therapy concentrates on increasing or maintaining an individual's independence after a TM attack. This therapy will focus on improving a patient's ability to perform everyday tasks.

Some examples are being able to dress and clean themselves, make meals, and complete tasks around the house. Depending on the deficit, improvements to the home may improve the quality of living and safety of the individual.

Therapists may advise on strategies involving personal care and leaving home to fit the patient's functional ability.

Vocational Therapy

Vocational therapy involves helping individuals find or retain their positions of employment. This therapy can also include improving an individual's skills, searching for potential employers, and helping with job searches.

Another role of a vocational therapist may be to communicate with an employer on your behalf. They could suggest changes in the workplace to accommodate your condition better if you have significant deficits from your Transverse Myelitis attack.

Psychotherapy

Psychotherapy involves managing the mental effects of being diagnosed and living with Transverse Myelitis. This therapy could include stress, anxiety, depression, sexual dysfunction, and other emotions and behaviors.

Being diagnosed and living with a rare condition such as Transverse Myelitis can significantly affect your mental health. If you believe it has affected your mental health greatly, then looking into psychotherapy may be beneficial.

Finding others diagnosed with Transverse Myelitis to connect with may lighten the mental load of living with this condition. You may want to check out our list of Transverse Myelitis Support Groups to find others also diagnosed with TM.


Recovery from Transverse Myelitis

Recovery from Transverse Myelitis differs on a case-by-case basis. Some patients recover with little to no issues, while others have significant and permanent problems. Most people tend to have at least some recovery from the condition. Permanent topics include pain, paralysis, weakness, incontinence, and loss of or abnormal sensations. Often these deficits can broadly impact the quality of life of the individual.

Most of this recovery tends to occur within the first few months following the TM attack. However, some people have experienced recovery years after the initial onset of the condition. Early acute treatment combined with aggressive physical therapy can improve the recovery of individuals with TM.

Significant recovery is reportedly less likely in people who experience a sudden onset of symptoms and do not experience much improvement within the first three to six months. But those with severe symptoms can still experience good to full recovery. The myelin sheath surrounding the nerves in the spine can repair itself, although not always back to its original condition.

Individuals sometimes go on to recover fully before another TM attack occurs. Additionally, others do not complete recovery before experiencing a relapse. If an underlying condition causes Transverse Myelitis, treatment must be focused on with this in mind. Preventative treatments discussed earlier can prevent future attacks, contributing to the person's overall recovery.


The information above is compiled from medical sources in the references. Do not make medical decisions based on the information here. Please see our disclaimer for more details.

Scott last updated this page on the 28th of November, 2022.


References

10 facts everyone should know about Transverse Myelitis. (n.d.). Retrieved October 26, 2020, from https://www.myelitis.org.uk/uploads/1/5/8/2/15824690/10_facts_about_tm_-_tm_awareness_day_-_finalv2.pdf

Clardy, S. (2020). 2020 RNDS | What is Transverse Myelitis (TM)? United States of America: SRNA. Retrieved from https://www.youtube.com/watch?v=HkCjO_A82yM

Diagnosing Transverse Myelitis (TM). (n.d.). Retrieved November 3, 2020, from https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/transverse_myelitis/about-tm/diagnosis.html

Multiple sclerosis. (2020). Retrieved October 29, 2020, from https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

Symptoms and Diagnosis of Transverse Myelitis. (2019). Retrieved November 7, 2020, from https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Transverse-Myelitis/Symptoms-and-Diagnosis

Symptoms of Transverse Myelitis (TM). (n.d.). Retrieved November 7, 2020, from https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/transverse_myelitis/about-tm/symptoms.html

Transverse Myelitis. (n.d.). Retrieved November 7, 2020, from https://www.columbianeurology.org/neurology/staywell/transverse-myelitis

Transverse Myelitis. (2019). Retrieved October 26, 2020, from https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Transverse-Myelitis

Transverse Myelitis A guide for patients and carers. (2018). Brain & Spine Foundation. Brain & Spine Foundation. Retrieved from https://www.brainandspine.org.uk/wp-content/uploads/2018/02/BSF_Transverse-myelitis-A5-booklet.pdf

Transverse Myelitis Fact Sheet. (2020). Retrieved October 26, 2020, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Transverse-myelitis-fact-sheet

Transverse Myelitis TM. (n.d.). Retrieved October 26, 2020, from https://wearesrna.org/living-with-myelitis/disease-information/transverse-myelitis/

Treatment for Transverse Myelitis (TM). (n.d.). Retrieved November 7, 2020, from https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/transverse_myelitis/about-tm/treatment.html

Treatments of Transverse Myelitis. (2019). Retrieved November 7, 2020, from https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Transverse-Myelitis/Treatments

What is Transverse Myelitis? (n.d.). Retrieved November 7, 2020, from https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/transverse_myelitis/about-tm/what-is-transverse-myelitis.html

What Is Transverse Myelitis? (2020). Retrieved November 4, 2020, from https://www.webmd.com/multiple-sclerosis/transverse-myelitis-facts

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About the author 

Scott Tarpey

Scott was diagnosed with Transverse Myelitis (TM) in March 2020 caused by MOG Antibody Disease (MOGAD). He founded MyMyelitis in July 2020 to raise awareness of TM, MOGAD and similar neurological conditions to help others with their recovery.