On Saturday, May 27, 2000 the third meeting of the New York Transverse Myelitis Awareness Group was held at Ben's Delicatessen and Restaurant in Bayside, Queens. The luncheon, support-group meeting marked the first anniversary of the New York State Resolution and Proclamation of Transverse Myelitis Awareness Day. On this special occasion, fifty persons attended the meeting, including TM members and their families and friends from all over the New York region. Some of the attendees traveled from as far as Newark, New Jersey and Madison, Connecticut.

Dr. Douglas A. Kerr, a co-director and distinguished neurologist at Johns Hopkins Transverse Myelopathy Center at Johns Hopkins Hospital in Baltimore, MD had kindly consented to be our guest speaker. Fortunately for us, he was able to attend the meeting because he had a previous engagement in the area.

The meeting began with introductions; I wanted Dr. Kerr to meet our NY TMA members, and some of the attendees were meeting each other for the first time, as well. After the luncheon, Dr. Kerr began his formal presentation. He opened his remarks with a description and anatomy of the spinal cord and the definition of TM and how it effects the spinal cord. He discussed the four major symptoms associated with TM, which include weakness, numbness, bladder and bowel dysfunction and pain. His comments were a general overview of the disease before getting to the more specific aspects he wished to discuss.

He remarked that most patients with TM have spasticity while a fair number of them also have pain due to the illness. He further commented that both symptoms may interfere with recovery and with quality of life. He explained that spasticity often makes it harder to move about or to use one's extremities in a coordinated way. Many medicines are prescribed for these conditions, but unfortunately, he said the doses may be inadequate or in suboptimal combinations and have troubling side effects, such as fatigue. He went on to say that at Johns Hopkins, a novel approach is employed and may be appropriate. A small catheter from a subcutaneous pump is inserted directly into the fluid space which bathes the spinal cord. This method can administer medicines directly into this fluid either for pain control or for relief of spasticity. The medicines do not travel throughout the body and so there are fewer side effects. Patients frequently report good to excellent results and wish they had started using the pump sooner as a means of pain/spasticity management. Dr. Kerr also emphasized that this procedure should be done only by experienced doctors or at large hospitals and/ or a major university.

Dr. Kerr explained that TM is mostly a one-time occurring illness unless there is an underlying condition, such as Lupus or Multiple Sclerosis and then TM can become a relapsing or reoccurring condition. He categorized TM as an auto-immune disorder which occurs when the anti-bodies produced by the immune system to fight foreign substances or viruses, instead attack the cells they were produced to protect causing focal inflammation at one level of the spinal cord. Dr. Kerr said that TM can happen at any age and nor is it gender or racially specific.

Dr. Kerr then posed a question for the group. He asked, "how many patients were diagnosed with TM at the onset of the illness versus how many were diagnosed much later?" At least half responded to a later diagnosis. He explained how we can better educate our doctors to TM by providing them, for example, with information from the Johns Hopkins Transverse Myelopathy Center website or the TMA website. Dr. Kerr feels very strongly that you should not remain with a doctor who does not take an ongoing concern and interest in providing you with the best and latest treatments for TM. At this point in the discussion, many members who had come especially prepared to ask Dr. Kerr general or personal questions about TM proceeded to do so. Some questions concerned the use of the subcutaneous pump and who might benefit from it. Dr. Kerr replied that the pump would only help those where the inflammation effected the lower extremities. He said it would not benefit those with shoulder and hand involvement. Another member wanted to know if new treatments or drugs would help those with a long-standing TM condition. Dr. Kerr replied that, yes, it would also help and benefit those who have had TM a number of years. One of the members told of taking a prescription drug to lower her cholesterol, but instead worsened her TM condition. Dr. Kerr explained that you have to be very careful about the prescription or over-the-counter drugs you take because some of the side effects may cause muscle weakness. Other questions were about whether vaccinations or flu shots can cause TM. Dr. Kerr said it was possible although he didn't know of any studies being done to support this. An unusual question asked by a concerned parent of a seventeen-year-old daughter who had TM for two years was if there was a possibility that, as happened in her daughter's case, temperature sensitivity could be lost on one side of the body. Dr. Kerr replied that this was possible but quite rare, because temperature sensitivity loss usually effects both sides of the body. Another interesting question was posed, "Is there a difference between the lesion of TM and that of MS as seen on an MRI?" His answer was, "No, under a microscope, the lesions would look the same." Another member asked whether after six months or longer, would scar tissue show up on an MRI to indicate the presence of TM. He replied that, yes, it can depending on the damage done to the site. Generally, Dr. Kerr stated that, for example, a somato-sensory evoked potential test, urodynamic testing for impaired bladder function, spinal taps done to show any inflammatory response, will come up positive for TM. He also suggested seeing a neurologist who specializes in MS or demyelinating disorders. In order to follow Dr. Kerr's presentation, each member received comprehensive literature obtained from the Johns Hopkins Transverse Myelopathy Center Website. There was literature thoughtfully supplied by Debbie Capen, a TMA Officer, which included a guide to disability rights laws, TMA brochures, and a news release about the TMA celebration of five years of service.

The consensus of the members was that this meeting was a great success. Our special thanks to Debbie Capen, Secretary of the TMA, for coming all the way from California to attend our modest luncheon and especially for bringing her delightful friend and companion, Lori Biehler with her. We wish particularly to thank Jude Dudow for the tremendous job she did in helping us organize the meeting and performing all of the tasks necessary for a successful meeting. Our thanks to all of the TM members who came to the meeting and asked such thoughtful and pertinent questions of Dr. Kerr. And most of all, our heartfelt thanks to Dr. Douglas Kerr for his generosity, kindness and incredible knowledge that he so willingly shared with all of us.