By Barby Ingle, PNN Columnist  

This month as part of my series on rare diseases and conditions, we’ll look at transverse myelitis (TM), an inflammatory disease of the spinal cord. TM causes pain, muscle weakness, numbness, tingling, and bladder and bowel dysfunction. Severe cases can even result in sudden paralysis. 

Can you imagine being fine one minute and the next being paralyzed and losing control of your bowels?

The most famous person I have heard of having transverse myelitis is Allen Rucker, an author and comedy writer who developed TM spontaneously at the age of 51. Rucker wrote a memoir about becoming paralyzed due to TM: “The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life.”

As with many TM patients, Rucker was paralyzed from the waist down and has no control over his legs, bladder or bowel. He will need a wheelchair for the rest of his life. Despite these challenging conditions, Rucker continues to write and uses his communication skills to help others understand what it is like to live with a rare disease.

Transverse myelitis can occur at any age, but most often affects patients between the ages of 10-19 and 30-39. Some people do recover from TM, but the process can take months or even years. Most see improvement in their condition within the first 3 months after the initial attack, giving them a good idea of what they will face long-term.

There are many different causes of transverse myelitis, including viral, bacterial or fungal infections that attack the spinal cord. The inflammatory attack usually appears after recovery from an infection, such as chickenpox, herpes or shingles. TM can also be caused by immune system problems or myelin disorders, such as multiple sclerosis.

Patients who develop transverse myelitis can go through many treatments, including intravenous steroids for days to weeks at a time, plasma exchange therapy, antiviral medication, pain relievers, and drugs used to treat complications. There are some preventative medications to help keep inflammation down, avoid new flares and long-term complications.  

A patient can expect to undergo multiple MRIs of the spine as well as blood testing and possibly a spinal tap to check cerebrospinal fluid. They may also be started on physical therapy, occupational therapy and psychotherapy.

It can be difficult to know the course an individual with TM might take, but they fall into three areas: no or slight disability, moderate disability and severe disability.  The sooner that proper treatments begin for TM, the better the outcomes can be.

If you suspect you might have TM, keep track of when the symptoms started, what they are and how fast they progressed. Note if they presented through pain, tingling or other unusual sensations such as loss of bladder and bowel control or difficulty breathing. A provider will also want to know if you have recently traveled or had any infections or vaccinations.

If you are diagnosed with transverse myelitis, you can find support at the Siegel Rare Neuroimmune Association, a non-profit that advocates for people with TM and other neuroimmune disorders. They are a great resource for those who need assistance for research and daily living. Facebook also has several TM support groups, such as Transverse Myelitis Folks and Transverse Myelitis Society.

We are now halfway through our series on rare diseases and conditions. So far, I have covered transverse myelitis, Paget’s disease, Alexander disease, X-linked Hypophosphatemia, cauda equina syndrome, vulvodynia and Dupuytren's contracture. Next month I will look at Friedreich’s Ataxia.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.