Is It Multiple Sclerosis or Transverse Myelitis?
Diagnosing multiple sclerosis is a challenge for a variety of reasons, not least of which is the fact there are no definitive tests for the disease. It also doesn’t help that experts have not yet identified its exact cause(s), although they are entertaining and researching a number of possibilities.
One of the possibilities when diagnosing multiple sclerosis is transverse myelitis, a disease Deanna Kirkpatrick, administrator of the Facebook page MultipleSclerosis Unplugged, was diagnosed with at one time during her journey to uncover the reason for her symptoms. Unfortunately, Deanna’s story of diagnosis and misdiagnosis is not uncommon.
In fact, Deanna’s experiences with the healthcare system and confusion about her diagnosis rings true for many people who are caught up in the tangled web of identifying whether an individual has multiple sclerosis or something else.
Diagnosing multiple sclerosis
To diagnose multiple sclerosis, clinicians typically rely on a variety of factors, such as the patient’s presenting symptoms, health history, exposure to toxins, and the results of tests that measure balance, vision, mental function, reflexes, coordination, and movement. Magnetic resonance imaging (MRI) scans of the brain, visual evoked potentials, and spinal fluid tests also are used. Blood tests can be used to rule out other diseases.
The National Multiple Sclerosis Society notes three basic criteria for diagnosing the disease:
- Clinicians should look for evidence of damage in at least two different areas of the central nervous system, and
- Clinicians should find evidence that the damage happened at two different times, and
- They should rule out all other possible conditions that explain the findings
Transverse myelitis and multiple sclerosis
Deanna’s story of misdiagnosis spans about eight years, but here are the highlights. Her initial symptoms in 2006 included painful burning on her right side, buckling knees, and exhaustion. A trip to the emergency department revealed a dramatically high white blood count, and she was given antibiotics for what was determined to be a kidney infection--probably.
A few days later, Deanna lost the feeling in her left leg and was walking with an exaggerated gait, “like someone with MS.” She found it difficult to coordinate her arms and legs and placed a frightened call to her mother, a former nurse who lived seven hours away. When her mother arrived, Deanna went to the hospital.
Doctors evaluated Deanna and then announced, “you have multiple sclerosis.” Within a few days, however, they withdrew their diagnosis when she became paralyzed and her breathing became labored. Diagnosis at that point: unknown.
It was Deanna’s brother who, after scouring the Internet, came up with a diagnosis of traverse myelitis, information that he shared with his sister’s doctors. Although they initially dismissed his suggestion, they concurred several days later, specifically naming her condition as idiopathic longitudinal extensive transverse myelitis. It was April 2006.
Longitudinal extensive transverse myelitis is a syndrome and not a specific disease that has one cause. It is characterized by lesions in the spinal cord that extend over the length of three or more vertebrae. Symptoms include pain that often appears suddenly in the back or neck, bladder and bowel problems, weakness in the arms and legs, and abnormal sensations. Generally, people who have this syndrome seem to be at low risk for developing MS.
Deanna explained that “My lesions ran from T-11 to C-7 like a twisty road, then had lesions on C4, 5, 6, and a spot of C-3…If it had started at C-3, I would have been a quad or passed away.” Her condition was termed “idiopathic” because the doctors could not identify a cause.
Fortunately, Deanna improved, although it took months for her to re-learn how to walk and perform routine everyday functions. In six months she was able to return to work as a pharmaceutical rep, but it was short-lived. Eight weeks later she had a relapse and became bedridden for months.
Once again, the diagnosis of multiple sclerosis was mentioned (relapsing-remitting MS; January 2007) as Deanna continued to have relapses. She was prescribed interferon beta-1a (Rebif) which she later discontinued because of liver damage. Next on the drug regimen was Copaxone, which she continued until 2012.
Also see: How to Fix Myelin in Multiple Sclerosis
Deanna also was being monitored for neuromyelitis optica, for which she repeatedly tested negative. Neuromyelitis optica is a rare relapsing autoimmune condition that is often misdiagnosed as multiple sclerosis. This disease is associated with inflammation of the spinal cord and optic nerve and characterized by longitudinally extensive transverse myelitis.
Deanna’s condition worsened and she was told she had two choices: Tecfidera or a stem cell transplant. She made an appointment to meet with a team of neurologists, started on an all-organic diet (June 2012), and stopped taking Copaxone (October 2012). Then something unusual happened.
During her several months’ wait for an appointment, Deanna’s condition gradually and progressively improved. As she experienced more and more good days, her doctors made a discovery: her spinal cord lesions had disappeared. New diagnosis: NOT multiple sclerosis (April 2013). So what happened?
Deanna asked, “So did world class neurologists screw up? Or did I receive a miracle that my parents/friends/co-workers prayed for?”
Now after two years of remission, Deanna still doesn’t have an official diagnosis, but she admits that she’s “okay with that.” She does experience chronic nerve pain, chronic bladder infections, and chronic fatigue. To help manage these realities, she has a varied medication regimen: gabapentin, Cymbalta, morphine, hydrocodone, Modafinil, nitrofurantoin, and medical marijuana as needed. She is able to work for 2.5 hours a day at a local radio station doing voice-overs and pursuing her pet project, MultipleSclerosis Unplugged. Then, she says, “I am in bed for the rest of the day.”
I want to thank Deanna for allowing me to share her story. It’s my hope that it inspires others to never give up in their quest to get an accurate diagnosis and to live their lives as fully as possible.