by Scott

September 10, 2020

TM Information

Overview

Transverse Myelitis (TM) is a rare neurological condition which involves the inflammation of the spinal cord. The inflammation blocks nerve signals moving from the brain to other parts of the body, 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.


Symptoms of Transverse Myelitis

Symptoms of TM are often determined depending on where in the spinal cord the inflammation has occurred. Generally, functions are lost at the level of inflammation and the levels below as nerve signals are cut off 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 timepoint 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 or arms or around the torso. Pain can also be involved with loss of or abnormal sensations in the body.

Loss of or Abnormal Sensations:

Transverse Myelitis can cause abnormal sensations to the person’s body. Sensations includes burning, tickling, pricking, numbness, coldness, or tingling. These sensations are often felt in the legs, feet or toes. The medical term for this is called Paresthesia.

Shooting sensations can occur when the neck is bent forward and stops when the neck is returned back to normal position. This is known medically as 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. This usually tends to mean an increase in sensitivity which causes further discomfort.

Weakness of Limbs:

The main symptom of Transverse Myelitis is weakness of the limbs. Muscle weakness which happens in the legs is more common that in the arms. This is because the inflammation can occur 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 the 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 bowels issues are caused by the nerve signals in these areas being cut off from the brain. Issues can include feeling the urge of having to use the toilet, loss of control, having difficulty urinating or constipation and the inability to fully empty your bladder or bowels.

These issues can result in a person having to use devices to fully empty the bladder or encourage bowel movements.

Other Symptoms:

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


Causes of Transverse Myelitis

Transverse Myelitis can be caused by infections, immune system disorders and demyelinating diseases. The exact cause of TM is not know.

Instances where a cause is not known is called idiopathic Transverse Myelitis. But, if a cause is found this is useful to guide treatment.

Infections:

Infections may be linked to the cause of Transverse Myelitis. TM often onsets during or after the body has been fighting an infection. Some believe that the autoimmune reaction to the infection wrongly targets the spinal cord, causing the myelitis. 

Below are some different types of infection which have been linked to 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

It possible that other viruses may also incite an autoimmune reaction which causes TM. 

Bacterial Infections:

Bacterial infections though to be linked 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
  • Shistosomiasis
  • 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:

Multiple Sclerosis (MS):

Multiple Sclerosis is an autoimmune disease which 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. 

Neuromyelitis Optica (NMOSD):

Neuromyelitis Optica Spectrum Disorder is an autoimmune disease which primarily affects the eye nerves and the spinal cord. Aquaporin 4 (AQP4) protein which is found in the blood has been linked as a cause.

MOG Antibody Disease (MOGAD):

MOG Antibody Disease is a neuro-inflammatory condition where the immune system attacks the MOG cells. MOG cells are found 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.


Diagnosis of Transverse Myelitis

The development of symptoms over time is often useful to arrive at a diagnosis of Transverse Myelitis. A neurological examination is performed to diagnose the condition. This is performed 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. Inflammatory lesions of the spinal cord and brain can be spotted in an MRI scan. Lesions in the brain can give ideas to potential causes of TM such as MS, NMOSD and MOG Antibody Disease.

When having an MRI scan you will lie in a long machine shaped like a tube. Whilst the scan is running the machine makes a lot of 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):

Lumbar puncture (also called spinal tap) is a procedure where a sample of cerebrospinal fluid (CSF) is removed from the body. This is done by inserting a needle between the bones in the spine where the CSF is located. The sample is then taken to a laboratory for testing.

CSF also surrounds the brain can be used to find an infection or other of a causes of TM such as MS. The level of white blood cells and proteins in the fluid can possibly indicate a cause.

During the procedure, the lower back will be numbed with anaesthetic 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 are also used in the process of finding a diagnosis for Transverse Myelitis. Certain infections, diseases and disorders such as HIV, Sjogren’s disease and Lupus (systemic lupus erythematous) can be identified by blood tests. A vitamin B12 deficiency relating to TM can also be identified via blood test.

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. The presence of these antibodies would change the individual’s diagnosis significantly as future treatment is likely to be different than an idiopathic episode of TM.


Treatment of Transverse Myelitis

The treatments for Transverse Myelitis are very dependent on the cause (if one has been identified) and severity of the condition. Usually corticosteroids and/or plasma exchange are used initially to treat TM acutely.

After the inflammation has reduced, the other treatments can be introduced to deal with symptoms, 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 are often used to treat Transverse Myelitis by reducing spinal inflammation and to calm the immune system. This is usually performed for 3-5 days with drugs such as methylprednisolone or dexamethasone. This treatment is also tended to be followed by a course of oral steroids over the next weeks/months.

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

Plasma Exchange:

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

PLEX works by replacing the plasma of the individual’s blood with new plasma or an artificial substitute. As part of the exchange any antibodies or proteins in the plasma are removed from the patient. The PLEX procedure takes several hours to complete and could take a number of sessions over a few days to complete.

Preventative Treatments:

Some cases of Transverse Myelitis are cause by underlying conditions such as MOGAD, NMO and MS. If this is the case, preventative treatments may be used to reduce the likelihood of another attack. One such treatment is IVIG:

IVIG:

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

Antiviral Medication:

Antiviral medication is considered when a viral infection is believed to have caused the Transverse Myelitis attack.

Symptom Medications:

Different medications can be used to treat the various symptoms of Transverse Myelitis. If breathing is affected, a ventilator could be used to ensure the individual gets enough oxygen. 

Pain treating drugs can also be administered to the individual. Depending on the type of pain, different medications may be used to treat it.

Muscle pain has been treated by drugs such as acetaminophen, ibuprofen, and naproxen. Nerve pain can also be treated by certain antidepressant medication muscle relaxants and anticonvulsant drugs.

Other medications to treat symptoms such as muscle spasms, bladder incontinence, stiffness & spasticity, sexual dysfunction and manage depression may also be issued.

Therapies:

Rehabilitation therapy may be necessary for those with permanent disabilities caused by a TM attack. Rehabilitation can take a number of 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 aim of the therapy is to increase independence of the individual to great 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 with various healthcare professionals as part of their rehabilitation therapy. Physiatrists, physiotherapists, occupational therapists, vocational therapists and mental health professionals may be needed as part of the rehabilitation process.

Physical Therapy:

Physical therapy is focus on increasing/retaining strength, coordination and ability to use muscles affected by TM. This also includes techniques to control 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. This is likely to come in the form of movements and exercises to be repeated often to regain flexibility and strength to muscles. In doing so, the effects of muscle spasticity, weakness and spasms may be improved.

Occupational Therapy:

Occupational therapy is focused on increasing or maintaining an individual’s independence after a TM attack. This will likely be focused around 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 be suggested to improve the quality of living and safety of the individual.

Therapists may also be able to advise on strategies involving personal care and leaving the home to fit the functional ability of the patient. 

Vocational Therapy:

Vocational therapy involves helping individuals find or retain their positions of employment. This can also involve improving 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. This could be to suggest changes in the workplace to better accommodate your condition. This could be useful if you are left with significant deficits from your Transverse Myelitis attack.

Psychotherapy:

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

Being diagnosed and living with a rare condition such as Transverse Myelitis can have a significant effect on your mental health. If you believe it has affected your mental health significantly 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 seems to differ on a case by case basis. Some patient’s recover with little to no issues whilst others have significant and permanent issues. Most people tend to have at least some recovery from the condition. Permanent issues can include pain, paralysis, weakness, incontinence and loss of or abnormal sensations. Often these deficits can largely impact the quality of life of the individual.

Most of this recovery tends to take place 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 has also been shown to improve the recovery of individuals with TM.

A significant recovery is reportedly more difficult in people who experience 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 completely recovery before experiencing a relapse. If an underlying condition is found to be the cause of the Transverse Myelitis, it is important that treatment is focused with this in mind. Preventative treatments discussed earlier can prevent future attacks, contributing to overall recovery of the person.


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

This page was last updated by Scott on the 7th November 2020.


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

About the author

Scott

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.

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