TM can occur in any population at any age. In general the cause is unknown. A subset of people with TM have a related disorder, neuromyelitis optica. Some people with incomplete TM may develop multiple sclerosis, but most patients with typical TM do no go on to have MS. Recently a team at Johns Hopkins has shown that an immune protein Il-6 is markedly elevated in the spinal fluid of patients with transverse myelitis. They feel that this may be a cause of TM, but this has not yet been established.
TM may occur with other diseases, and sometimes testing needs to be directed at isolating these disorders as well as the TM (See below).
- Idiopathic. Much of the time, a specific cause of TM is not identified
- Multiple sclerosis: TM can develop as one type of MS attack (relapse), including the first MS attack. In general, TM in MS tends to be a less severe form.
- Devic’s Neuromyelitis Optica, is a disorder related to MS that produces severe recurrent TM and optic neuritis (inflammation in the optic nerve that connects the eye to the brain).
- Systemic inflammatory diseases. Diseases such as Systemic Lupus Erythematosus, Sjogren’s syndrome, or sarcoidosis can cause TM.
- Infections. TM can develop in association with a variety of infections, both viruses (for example, herpes simplex, Epstein-Barr, influenza, and HIV) and bacteria (for example tuberculosis, syphilis, and Lyme).
Transverse myelitis is a rare neurological syndrome which may occur in anyone. Patients develop a rapidly progressive disorder with back pain, numbness and tingling in the legs, trunk and sometimes arms, weakness in the legs and sometimes arms, and trouble with bowel and bladder function. Transverse myelitis is an inflammatory disorder of the spinal cord. It may be due to a reaction to a virus or other infection by the immune system which becomes directed against the body's own tissues (an autoimmune disorder). Some patients have fever associated with their myelitis. The weakness may become severe at times leading to complete paralysis.
In general TM is a one time disease with a sudden onset and stabilization or improvement afterwards.
The first step to making the diagnosis of TM is for a physician to review the medical history and perform a physical examination. If this review suggests a spinal cord problem, making the diagnosis of TM involves 1) eliminating the possibility that a process other than inflammation is affecting the spinal cord, for example a tumor, a herniated disc, or abscess compressing the spinal cord, 2) confirming the presence of abnormal inflammation within the spinal cord, and 3) trying to identify the cause for the abnormal inflammation.
The diagnosis of TM is considered when patients develop subacute spinal cord symptoms and signs as describe above, and MRI imaging or other imaging does not show compression of the spinal cord or another cause of spinal cord disorders. MRI often shows a long segment of altered signal in the spinal cord which extends multiple segments along the spinal cord, likely reflecting demyelination and nerve injury in the spinal cord. This sometimes has swelling of the spinal cord associated with it. Cerebrospinal fluid may show increased white cells and protein, and Il-6 may be elevated (Il-6 is not yet a standard spinal fluid test).
In TM, the spinal fluid frequently shows an increase in white blood cells. This may be more of an increase than is usually seen in multiple sclerosis. Protein may be elevated. Il-6 may be increased in CSF (test may not be available) In addition, patients with TM usually do not have oligoclonal banding, which is relatively common in MS.
TM is a relatively rare disease, and so there are no well defined randomized trials of treatment in this disease. Most of what we know about treatment for TM comes from case studies or groups of treated patients.
At this time, intravenous methylprednisolone is the front line treatment for an attack of TM. Usually this is given over a 5-7 day course. In TM a tapering dose of steroids is usually used after IV therapy is finished. The aim is to reduce inflammation and speed recovery from the disease. Patients on steroids need to be monitored for increased blood glucose, low potassium, and sleep disturbance. There may be mood changes (irritability, crying, anxiety) when people are on steroid therapy. Other short term complications of steroid therapy include weight gain, flushed cheeks, facial swelling, a metallic taste (when using IV solumedrol), and disturbed sleep. Long term complications of steroids include susceptibility to infection, osteoporosis, development of cataracts, personality change, obesity, skin changes, and rarely injury to the shoulder or hip joint (aseptic necrosis). In most cases hospitalization is required for an attack of TM due to the severity of the disorder.
Another approach to treatment is a process called plasmapheresis. This may be beneficial in TM since it seems that it effectively removes antibodies from the circulation. This is a treatment in which the blood is circulated through a machine that withdraws components of the immune system from the circulation, reducing immune activity. It is usually a process which takes a few hours and is done every other day for 10-14 days, often as part of a hospital stay. In TM a five to seven treatment course of plasmapheresis is usually needed. Plasmapheresis may required the placement of a central venous catheter to allow for blood to be removed from the system rapidly. Risks of plasmapheresis include discomfort from taking blood, sometimes a tendency to bleed due to a reduction in platelets, and infections.
The Mellen Center team of caregivers generally consists of:
A neurologist is a medical specialist trained to evaluate problems of the nervous system, including the symptoms of Transverse myelitis (also known as TM). Neurologists have an in-depth understanding of the central nervous system and how it is affected by disease. Ideally, it is helpful if the neurologist is affiliated with a research facility, or a teaching hospital, particularly when it comes to rare diseases such as TM. The neurologists at the Mellen Center specialize in the diagnosis and treatment of multiple sclerosis and related disorders, including TM.
- Diagnose TM
- Make recommendations for treatment, testing, and symptom management
- Are available to answer your medical questions, sign forms, fill prescriptions, and provide help with disability-related issues
- May initiate courses of care for TM including disease modifying therapies, symptom management, and referral to other members of the team for treatment and counseling
A consulting neurologist makes recommendations to your local doctor or neurologist for treatment, testing, and symptom management.
Rehabilitation Specialists (Physiatrists)
At the Mellen Center rehabilitation specialists work closely with the neurologists and other team members to provide high quality rehabilitation services to people with TM and other disorders as well as to other patients with disorders causing spasticity, balance disorders, and leg weakness. The physiatrists evaluate patients for treatment needs, develop plans of care, and monitor their progress. They are involved in treating patients using Baclofen pumps and Botox injections. They are involved in research using new rehabilitative devices to improve movement. They oversee the provision of physical therapy and occupational therapy at the Mellen Center. At the Mellen Center rehabilitation is fully integrated into the care of the patient.
Advanced Practice Clinicians
Advanced practice nurses (APNs) are clinical nurse specialists, nurse practitioners, and registered nurses with additional education (certification or master's degree) and expertise in a specialty area or clinical practice.
Physician assistants are specialists that undergo a specific training program to enable them to work with physicians in an area of clinical practice. Together, APNs and physician assistants can be considered advanced practice clinicians and are an integral part of the Mellen Center’s health care team.
Working independently and in collaboration with a doctor, advanced practice clinicians are able to provide a wide variety of services.
APCs who treat people with TM provide many health services including:
- Patient and family education about TM and related problems
- Ongoing assessment and management of TM symptoms
- Counseling on general health maintenance and wellness
- Information about medicines and monitoring side effects
- Education in the management of bowel, bladder, or other personal care issues
- Guidance in determining when change might be needed in the treatment plan
- Administration and monitoring of medicines according to treatment and research protocol
- Coordination of outpatient care with home care services
- Consultation to health team members as well as outside providers
- Speaking at community programs about TM and related topics
At the Mellen Center we have integrated neuroradiology into the care fabric of our center. Our neuroradiologists provide us with state of the art imaging, using the latest in MRI technology to allow us the best evaluation of the brain and spinal cord. Our neuroradiologists are at the forefront of their field in terms of research and imaging technology. They are based in the Mellen Center so that there is a constant interplay between the clinicians and the radiologists at the center. Because MRI imaging is so key to the diagnosis and management of TM, we believe that having neuroradiologists on site allow us to do the best work we can to care for our patients.
Measuring and evaluating the cognitive and emotional state of people with TM is often an important part of TM care. At the Mellen Center we use neuropsychologists to do a detailed evaluation of cognitive function when it becomes clear that problems in this area are interfering with the patients life or the relationship with family or employers. Such information helps guide out counseling, therapy, and sometimes our medical treatment. It also helps us guide patients and families better in their care decision making.
Social workers provide personal support to people with TM and their families by offering:
- Short-term counseling and referrals for ongoing counseling
- Information about home care assistance services and assistive devices
- Recommendations of community resources, and local and national agencies that offer both information and support for people with TM and their families
- Financial resource information such as Social Security disability, supplemental security income, Medicaid, Waiver 4, and PASSPORT financial assistance programs
- Information about quality of life issues including living wills and durable power of attorney for health care
Psychologists are available to help people with TM cope with the cognitive, emotional, and interpersonal aspects of the disease. They offer:
- Psychological evaluation of emotional and interpersonal problems
- Individual psychological counseling sessions to reduce emotional distress and improve stress management skills
- Group psychological counseling to develop strategies for coping with the illness and the resulting life changes
- Neuropsychological testing to determine if TM is affecting cognitive functions such as attention or memory
Occupational therapists analyze how TM affects the way people perform their daily tasks, help them learn new ways to do familiar activities, and prescribe proper seating as needed. Occupational therapists assist individuals in maximizing their level of functional independence. They offer:
- Individualized treatment through appropriate exercise and adaptive equipment, following an accurate assessment of each patient’s current level of functional performance
- Ongoing evaluation and appropriate treatment strategies to optimize the range of motion and muscle strength of patients’ upper extremities (arms and hands) to help them successfully complete activities of daily living such as dressing, eating, toileting, and bathing
Physical therapists are available to assess muscle strength, flexibility, coordination, balance, endurance, walking ability, and mobility. They specialize in:
- Improving function and providing instruction on managing physical disabilities
- Recommending appropriate exercises to maintain flexibility, while preventing and reducing pain
- Providing instruction regarding the use of assistive devices, braces, or other mobility aids to maximize independence
Vocational Rehabilitation Specialists
A satisfying work life is as important to the person with TM as to anyone. For people with TM, finding work that matches their skills, interests, and abilities can be especially challenging. Vocational rehabilitation specialists assist individuals with:
- Recognizing their skills and abilities
- Exploring new careers
- Locating jobs
- Preparing for interviews
- Developing safe work sites
- Coping with work-related issues
- Learning the many resources available for making career choices
Assessing an individual’s needs is the first step in vocational rehabilitation. Information from the assessment helps the patient and the counselor make the best use of vocational services. During the initial interview, a counselor reviews the person’s educational, work, and medical histories and assesses any factors that might affect his or her ability to work. A vocational evaluation also measures the person’s general abilities, and specific needs and interests. After the consultation, the individual might be referred to other services or community resources.
Registered dietitians provide nutritional counseling through diet management to promote good nutrition while preventing malnutrition. They are available to:
- Assess each patient’s nutritional needs based upon the progression of the disease
- Recommend changes in each patient’s diet to assist in the treatment of TM
- Develop individual care plans for each patient to promote a good nutritional status
- If necessary, provide calorie and protein supplements to increase daily caloric and nutrient consumption
- Adapt the consistency of foods and liquids if swallowing becomes difficult
Speech-language pathologists can help people with TM maintain as many verbal communication skills as possible. They also teach techniques that conserve energy, including non-verbal communication. The speech-language pathologists are available to:
- Evaluate and treat speech disorders and communication problems
- Assess swallowing problems to provide assistance with eating and drinking
- Recommend appropriate communication technologies to provide treatment that will aid in the success of daily activities