I'd like to take this opportunity to introduce myself to the members of the TMA. My name is Dr. Douglas Kerr and I am a neurologist at Johns Hopkins Hospital. I have established through the department of neurology a center of excellence, the Johns Hopkins Transverse Myelopathy Center (JHTMC). The JHTMC has three explicit goals: 1) the treatment of patients with transverse myelitis, 2) determination of the causes of TM, and 3) establishment of better treatments (and potentially a cure!) for patients who have TM. We have gathered expert physicians and health care professionals from a variety of disciplines, including, neurology, urology, rheumatology, orthopedic surgery, neuroradiology, rehabilitation medicine and physical and occupational therapy, with the express goals of providing a comprehensive diagnostic evaluation and maximizing recovery and function. The JHTMC is the only such center for excellence in the entire world. As such, it provides a unique opportunity for patients and care givers to get questions answered, to understand more about their disease, and to ensure that appropriate steps are being taken to maximize function and independence. It also allows for research to be done in order to better understand the causes of this disease and to devise and evaluate more effective treatments.

I became interested in TM through a variety of occurrences. While I was completing my neurology residency, I took care of two patients with TM and became determined to understand more about this mysterious disease. It seemed so dramatic a disease, with very little understanding of how it develops. Who gets it? Why do some patients recover, while others remain severely injured? How can we prevent TM? How can we develop treatments even for those people who have had their bout of TM long ago? It was then that I met Gunny (Richard Boyle). Many of you know this shy and reserved man. Gunny is a cousin of mine who developed TM in 1997. He contacted me and DEMANDED that I get involved with the TMA. I then spoke with Dick and Deanne Gilmur and became acutely aware of how difficult it is for patients with TM to get answers. Most physicians will see only one or two patients in an entire career, and therefore, are fairly uncomfortable with the presentation and management of patients with TM. As well, patients may get a few of their symptoms addressed by a physician, but then may have to "go shopping" for other doctors to address other concerns. This effort is time consuming and wasteful of energy. So, I decided to create a center in which a variety of care providers would attempt to give care "under one roof." Many of the physicians involved in the center have had expertise in TM even before we established the JHTMC. But I felt it was important to get everybody working together for a singular goal. By attracting a large number of patients, we learn more, and can utilize that knowledge to advance the understanding of this disease.

What do we offer at the JHTMC? A faculty neurologist with expertise in TM will be the primary director of your care while at Johns Hopkins. Drs. Kerr, McArthur, Irani, Royal and Pardo have extensive experience evaluating and treating patients with TM, and all have research interests relevant to this disease. We will obtain a comprehensive history, perform a physical examination, and review all of your previous medical records. We may also wish to determine quantitatively your strength so that we can follow your progress. We will answer any questions you have at this point, and discuss possible treatments. We will then suggest additional studies to be performed in order to evaluate your case most completely. At the end of your visit, you will again have a brief visit with your neurologist to summarize the evaluations done while you were here and to coordinate further care.

A rehabilitation physician, as well as physical and occupational therapists will evaluate virtually all patients. Drs. de Lateur and Brown have extensive training in developing strategies to maximize patient's function following the onset of TM. They will evaluate strength, range of motion, bowel and bladder function, ability to carry out activities of daily living, skin care, and sexual function as indicated. Therapy evaluations will determine the major limitations of function, including ambulation, transferring from bed to chair, using the toilet, bathing, and eating. Assistance devices for each of these functions may be recommended. A series of exercises may also be suggested for maintenance of tone, strength and range of motion. Dr. de Lateur has been part of a team that designed a machine to quantitatively evaluate spasticity of the lower extremities. This is a state-of-the-art machine, and one of only a few in the entire world. For some patients, this may be an important tool to investigate how much spasticity is interfering with function.

Most patients with TM have spasticity, while a fair number of patients have pain due to their illness. Both symptoms interfere with recovery and quality of life. Spasticity often makes it harder to ambulate or to utilize the extremities in a coordinated fashion. A wide variety of medications are available for these problems, but for patients with TM, medications are occasionally prescribed in inadequate doses, or in suboptimal combinations. Some of these medicines have troubling side effects including fatigue. For some patients who experience these side effects, a novel approach employed at Johns Hopkins may be appropriate. Dr. Staats inserts a small catheter from a subcutaneous pump into the intrathecal space (directly into the fluid space that bathes the spinal cord). He can then administer medicines directly into this fluid either for pain control or for relief of spasticity. The medicines do not get distributed throughout the body, and so there are fewer side effects from this approach. Patients frequently report excellent results and often tell us that they wished they had not waited so long to do this.

There will be a psychologic evaluation performed; each of the physicians involved with the JHTMC realize that adjusting to the limitations imposed upon you by TM is a difficult task. Every patient reacts to this in a different way, and you will inevitably experience a wide range of emotions as you adapt. We will ask each patient to complete a questionnaire examining your own mental state. We will also ask about your sexual functioning and suggest possible strategies to improve this if necessary. In this way, we hope to find those patients who are depressed or severely anxious. It is our goal to help you work through the expected negative feelings and develop a positive attitude about your self and your future life. We may suggest that you initiate therapy with a psychiatrist (you could see one while at Hopkins), or we may suggest an antidepressant medication. Since a patient's mental outlook is a vital determinant of continued recovery, it is critical that we assess and treat depression related to TM.

The vast majority of patients with TM have impaired urinary function. Some have difficulty initiating urination, while others have difficulty controlling the urge to urinate. Some patients have features of both. As a result, we may recommend that you undergo urodynamic testing. This is a procedure where a small catheter is placed through the urethra and into the bladder. We then can monitor the activity of the muscles which control urination, including the detrusor muscle and the urinary sphincter. It is only when these muscles operate in a coordinated fashion that urination occurs normally. Through this simple test, which takes approximately thirty minutes to complete, we can determine the cause of many patients' urinary difficulties and suggest exercise or a specific medicine to maximize function.

We may suggest additional radiologic studies to be performed both for diagnostic and prognostic purposes. Drs. Kraut and Beauchamp are examining whether certain specialized radiologic studies, including magnetization transfer indices, magnetic resonance spectroscopy, or diffusion-weighted MRI, provide additional insights into this disease compared to standard MRI studies.

Studies that utilize electrical impulses to examine muscle and nerve function are important in the evaluation of TM patients. Electromyography has been shown to help clarify patient outcomes and may help us to determine the extent of neuronal injury. Somatosensory evoked potentials examine the neuronal circuitry from the feet all the way to the brain. These studies help determine to what degree the neuronal impulses are "getting through" the damaged area, thereby clarifying the prognosis for continued recovery.

As part of our comprehensive evaluation, you may be asked to participate in a research study. Such an undertaking would be entirely voluntary on your part, and refusal to participate would not affect the care given to you at the JHTMC. These studies are designed to improve our ability to diagnose and treat patients with TM. Certain studies hope to elucidate why some patients recover significant function following TM, while others do not. There may be certain features of the immune response in some patients, specific cytokines or T cell subsets, for example, that result in increased damage to neurons within the spine. There may also be certain radiologic studies or electrical studies that enhance our ability to determine which patients will improve. Finally, novel therapies are rapidly being developed to enhance neuronal recovery of patients with spinal cord injury. Some of these developing therapies aim to diminish neuronal damage in the acute phase, while others hope to stimulate regeneration of neurons, potentially even years after the injury. Neural growth factors, neuronal stem cell transplantation, neuroprotective agents and many other strategies are being developed. There is both good news and bad news to report. First the bad: none of these therapies has yet been shown to work in humans, and none is routinely available at present. It will be, in all likelihood, 5-10 years before we can begin to restore function to patients with spinal injuries. And the good: virtually all physician-scientists in this field feel that a revolution in treatment will occur, allowing significant recovery of function to patients with TM. Until then, we need to assist patients in ensuring maximal function utilizing present medical technology, and to minimize the chance of recurrent injury either from TM itself, or from complications thereof.

For more information on the JHTMC, please visit our website at www.med.jhu.edu/jhtmc. If you wish to be evaluated at the JHTMC, please call (410) 614-1522. Please be advised that it may take weeks to months to be evaluated. Why? We need to obtain referrals from your primary doctor to allow you to be seen here. Each evaluation (rehabilitation doctor, MRI, electrical study, etc.) requires a separate referral, a process that must be initiated by you and your doctor. Some insurance companies do not even allow patients to be seen out of network. In addition, we need to coordinate your care as best we can, which takes a lot of planning. Each of the doctors has a full schedule, and at times we may be "swamped." I, for example, only see patients on certain days, and then on other days I am in the laboratory trying to create new ways to restore function to patients with TM.

I hope that our center is of service to patients with TM, and remember I am available for questions and concerns through the e-mail contact on the JHTMC webpage. I believe there is a brighter future for patients with TM!