In July of 1999, Johns Hopkins opened the first transverse myelitis center in the entire world. Why was this started? There were several reasons, including the fact that my research dating back to 1988 focused on central nervous system infections and inflammation. Foremost among the reasons for starting the center, however, was the tenacity of my cousin, Gunny (a.k.a Richard Boyle). He and the Gilmurs were quite persuasive that a significant need existed for such a center. They impressed upon me (confirmed by my subsequent experience) that too often patients received an erroneous diagnosis, or no diagnosis, or no follow-up treatment, or no understanding of what the future would hold for them. And I knew that to understand a disease, one has to see a lot of it and to have smart people think about it. With a rare disease like TM, this would never happen unless a 'center of excellence' was established.

So, Drs. Carlos Pardo, David Irani and myself dedicated ourselves to doing just that. We recruited physicians in other disciplines at Johns Hopkins, as well as other health care personnel, to see TM patients with us. The goal was clearly stated: to better diagnose and treat TM. Ultimately, we hope to devise restorative therapies for those who have had TM and preventative strategies for those at risk.

So, where are we now? We have seen over 120 patients with TM in under a year. Many of these patients were in the acute stages and received high dose steroids or a newer therapy, plasmapheresis. For those more removed from the acute event, we have attempted to focus on several issues: 1) to serve as an information resource about the disease itself, 2) to ensure that the medical evaluation was complete and to perform additional studies as needed, 3) to consult with local physicians as requested when new issues arose, 4) to suggest and implement aggressive health maintenance strategies, 5) to effectively and aggressively manage persistent symptoms, such as bladder dysfunction, pain or spasticity, and 6) to serve as a source of hope that we are working towards a day when we can better treat patients with TM.

We also have served as phone consultants for patients afflicted with TM and unable to come to Johns Hopkins. It is actually a rare day that I do not get called from somewhere in the world about a patient with a disease that sounds like TM (again, sometimes the diagnosis has been wrong). We will work with the family and local physicians, will have data sent to us for analysis, and will even analyze spinal fluid and blood in our laboratories.

We have had some problems along the way, however. My secretary, Philis Carbonell, is a wonderful and hard-working woman. But she and I have been truly swamped at times. (If anybody feels that she has done an excellent job for them, please write her a letter and let her know! It'll make her day). Some days we will get 75-100 calls or e-mails just relating to TM patients. (I also see patients with multiple sclerosis). So, we have failed some people in getting to them promptly. I apologize for that and hope that as we grow, we will improve in this regard.

We hope to begin some clinical trials within the next year. One of those would be the drug fampridine (4-AP) that many of you have heard about or even tried. Some patients have had marked success with this, while others have not. We hope to investigate this further and determine who would most benefit from this drug. We also hope to investigate the extent of and potential treatment for sexual dysfunction in TM, and to examine novel therapies for bladder dysfunction.

Every time I hear about someone getting TM, I become more resolved to better understand this disease. My hope is that the JHTMC will continue to grow both in size and in knowledge, and that our capacity to treat TM will likewise improve.