Refer Your General Practice Physician to Other TMA Members
The Transverse Myelitis Association is developing a network of physicians interested in caring for patients who have long-term symptom management issues from TM, NMO, ADEM and ON. I presented my vision for this network of physicians in my column in the TMA Journal Volume I. We are initiating this project by establishing a network of family practice or general practice physicians and pediatricians.
We have formed a team to manage this important project. Dr. Angela Middleton is a family practice physician in Virginia who also has transverse myelitis. Dr. Benjamin Greenberg is the Co-Director of the Johns Hopkins TM Center and serves on the TMA Medical Advisory Board. Dr. Greenberg and the other physicians associated with the Johns Hopkins TM Center have a strong and long-term commitment to providing education to physicians about the acute and long-term treatment of the neuroimmunologic disorders. This education component will be a critical element of the physician network. I will also serve on this team.
Angie, Ben and I recently had a meeting exclusively devoted to our work on this project. We recognize the many challenges involved in accomplishing this task and we have accepted that it will take a long time to develop. We also recognize the critical value of this endeavor and we are committed to doing the work required, however long it takes. The results for all of you will be a network of family practice physicians and pediatricians who have access to information about the neuroimmunologic disorders, information regarding the treatment strategies for the symptoms of these disorders, and experience with caring for people with these disorders. It will often be the general practitioner that has openings available on short notice, when it may take weeks to get in with the specialist. This is by no means an attempt to phase out the specialists, but to give you more guidance as far as the resources that are available for your medical care. Your general practitioner should know you better than any of your physicians, because their training requires them to look at the whole picture.
We need your help! If you are currently seeing a family physician or pediatrician who is providing you with excellent medical care, including the treatment of your or your child’s symptoms from TM, NMO, ADEM or ON, we need for you to send us their names and contact information. This information can be submitted on the form below on this page. Please provide the physician’s complete name, mailing address, phone number, and if possible, an email address. Please identify whether the doctor is a family/general practice physician, an internal medicine physician or a pediatrician. We are also asking you to provide us with all of your contact information in connection with this reference in case we need additional information from you about the basis of your recommendation. In your referral, please include how long you have been seeing this physician and please confirm with the doctor’s office that this physician is accepting new patients. If this project proves successful, we also hope to eventually extend it to include other specialists, such as neurologists, urologists, psychiatrists, etc. As many of you already know, some specialists are more knowledgeable than others when it comes to these rare neuroimmunologic disorders.
The symptoms from TM, NMO, ADEM and ON are complex and difficult to manage. Some people have remarkable recoveries from their immune attacks. Unfortunately, even for those who have good recoveries, there are often symptoms from myelin and neuronal damage in the spinal cord that will go on for the long term. Symptoms such as nerve pain, paresthesias, spasticity, depression, and fatigue typically involve focused attention from a physician. Multiple treatment strategies are frequently required before the most effective therapies or combinations of therapies are found. There are no silver bullets and there is most definitely not a one-size fits all approach for treating these symptoms.
The goal of our physician network project is to help people find the highest quality medical care. If you are currently receiving medical care from a physician who you would recommend to others in the TMA community, please take the time to get me this information. We are an international organization and we are very interested in serving our international membership. Please send us the names of your physicians who you would recommend from around the world. If you are a physician and would be interested in serving on the physician network team, we would appreciate your participation. |