Providing Information and Support Without Offering Medical Advice
Sandy Siegel

I receive phone calls and email messages on a daily basis. Most of these contacts are from people desperately seeking answers to their questions. So much about having TM is a mental and emotional challenge. People who get TM know nothing about it. The medical community has only a very partial understanding of it. So little research has been done and there is very little that can be said that is definitive about causes or treatments. People are loaded with questions.

I am regularly faced with the challenge of providing information to people without offering them medical advice. I have been giving serious thought as to how I could provide a set of guidelines to people about how to accomplish this goal, because there are none of us without medical training who should be providing medical advice to people. And a medical professional would not provide specific advice to a patient without collecting a complete medical history and without performing a thorough evaluation of the person. And that is certainly not what is being done on the telephone or on the internet. How information can be provided and how questions can be responded to in lay terms and without offering medical advice is a critical issue for people who are leading support groups around the country and around the world. But it is also an important consideration for those who communicate with other people who have TM, including people who participate in the tmic and on our bulletin boards.

I have discussed this issue with some of the other support group leaders. I am not smart enough to distill all of my thoughts on this subject down to a concise code of conduct that would serve as guidelines. So, I will employ my usual approach; I'll just ramble on in a systematic fashion, and hopefully by the end of the article, you'll figure out what I'm getting at. Okay, if you're up for this, I'll get started. Try to keep up.

When I am responding to inquiries from a caller, the first thing I communicate is that I am not a physician and that I have absolutely no medical training. I let them know that my wife, Pauline, has TM and that she is the reason for my involvement in the TMA. As some of them hear me referred to as "doctor" on my voicemail message, I clarify for them immediately that I am the wrong kind of doctor. I tell them that I have a Ph.D. in cultural anthropology, the science of esoteric and irrelevant stuff. I also tell them that I am talking to them from the international headquarters of the TMA, which also happens to be my kitchen.

I believe that my introduction serves to place me in the proper role and social context. After we have talked for a while and they have heard me say "neuroimmunologic" and "demyelinating" and "parasthesias" a few times, I repeat that I am not a medical doctor and that they are hearing all of this free information from some guy in Ohio standing in his kitchen; the reminder is important in the event the caller is being lulled into a sense of seriousness through my use of these multi-syllabic terms.

I have been responding to questions about TM for nine years, and have developed some experience at this part of the job. This job has lots of different parts. I have learned a lot about TM. I have learned a lot as the newsletter editor; editing articles and working with specialists in order to get the best information about TM and the other neuroimmunologic disorders to our membership. I have read medical journal articles. I communicate regularly with physicians who treat people with TM. I have administered and have been analyzing the TMA survey which has had more than 740 respondents. I have attended all of the symposia and workshops and have listened to hours and hours of presentations about TM. And I have been through the experiences that I share with Pauline. I am in daily communication with people from all over the world who have TM and I share in their experiences. I read the tmic and the bulletin boards regularly. There is a lot I can say to people who call me and ask me questions. But I am not an expert and I am not a medical professional. I try to provide them with as much information as I am able; but I am as vigilant as possible about my status and consciously attempt not to provide them with medical advice.

I draw kinship diagrams and try to figure out what satellite dishes have done to the Dugum Dani and Yanomamo. I don't diagnose disease and I do not prescribe treatment.

My first focus in a conversation is on the kinds of questions I am being asked. There are just no definitive answers to some of their questions. I often get a phone call from someone who has had TM for a short time and they want to know if they are going to recover. My approach with people who ask questions to which there are no answers is to help them to feel comfortable with the uncertainty. I talk about the possibilities for recovery that are published in the literature and the relation of those possibilities to time. I remind people that every case is different, and that while there are these published incidences, these are general ways of thinking about what is possible, and no predictor of what is going to happen in their case. I also strongly encourage a positive attitude; I do summersaults to encourage them to be positive - whether they get a good recovery, a fair recovery or no recovery. I talk about people I know who have a life after TM in every instance. And I get them plugged into the network of support which exists around the world - literally and virtually. I let them know that they do not have to go through this experience alone.

I talk to them about how overwhelmed they might be by all of what is going on and encourage them to be honest with themselves about whether they need help or if it would be easier for them to handle if they sought help from a professional. And I talk to them about accepting help from their family and friends. Our members around the world may be posting signs up in front of their homes asking for help; in America, we are fiercely independent, and accepting help from friends and even our closest relatives is difficult sometimes. I try to help people to acknowledge that not only do they need this help; they are doing those who want to help a favor. People need a way to show their concern. Allowing your neighbor to watch the kids for you and to help prepare meals is something they need to do for you. You are taking something away from them by not permitting them this opportunity. Relax about it. They feel good about helping you, and they will get access to the electric hedge clippers and snow blower in your garage until the end of time. That's the way reciprocity works.

I sometimes get calls from people who have not yet received a diagnosis and want to know if I think they have TM. Some of these people visited an emergency room or a general practitioner and were sent home after no cause of their symptoms was identified. After they tell me that they have not urinated since yesterday at 4:00 in the afternoon, I ask them to print Dr. Kerr's articles from the 'about TM' link on the TMA web site which includes a decision chart enumerating the steps to a diagnosis of TM. Then I tell them that if there is a medical school nearby to go to their emergency room. I also let them know that the neurologists who best understand TM are those who specialize in MS - encourage the emergency physicians to find one of those. I also tell them about the Johns Hopkins TM Center and indicate that if the physicians are having a difficult time figuring out what is wrong or what to do, if they do figure out that it is TM, that they should consult with Dr. Kerr immediately.

I also receive phone calls from people who have had a TM diagnosis and they think their symptoms are getting worse. They call me to get an opinion about what they should do about it, or they tell me that they have seen their doctor and their doctor is not taking them seriously about their symptoms. Okay, this is dicey stuff for me. I have learned from anecdotal experience that the symptoms a person experiences with TM can become exacerbated under certain circumstances. For instance, a person who is sick with the flu or some other infection, who is experiencing unusual amounts of stress, who has had some other health problems, is not getting sufficient sleep, may also experience a worsening of their TM symptoms. If muscles are weak, there may be a greater weakening; if they have bladder or bowel urgency, under these circumstances, the urgency can become worse. Nerve pain or fatigue or spasticity may be intensified. Everyone with TM faces the challenge of having to learn when they are experiencing an explainable exacerbation of symptoms, and when they are experiencing something that should trigger a different and more elevated cause for concern. And this is what I try to get to in my conversation. If a person begins to experience a set of symptoms that they did not previously experience or experience symptoms at a level that was not previsously experienced, my concern goes to something more than an exacerbation of symptoms. Fortunately, this happens very infrequently, but it happens. It happens to people who have recurrent TM or who have a second episode which becomes MS or to people who have Devics. And it also happens to people who have a demyelinating attack which is taking a long time to resolve.

If they have any doubts, I encourage them to go back to their doctor. It does them no good at all to be at home worrying about what is happening to their body; and I am not going to get it resolved for them over the telephone or, for that matter, if they were in my kitchen with me. Now, this is even dicier stuff, because if their neurologist told them there is nothing going on, you need to go home and relax, this person is faced with having to go back to this neurologist to tell them that the idiot in his kitchen in Ohio told me to come back to you for another look, or they have to call another neurologist and wait for two months to establish in this practice. But they have to do one or the other.

If I have any concern at all that they could be having a new demyelinating attack, I send them to the emergency room at the medical school with the three articles by Dr. Kerr from our web site.

Chitra, Phylis, and Dr. Kerr and I have worked out a process for getting assistance to people who contact me and who seem to be experiencing a demyelinating attack. I am able to get the family in touch with the JHTMC and we are able to get the physicians caring for the patient in communication and consulting with Dr. Kerr as quickly as possible. However, if a person is not having a demyelinating attack, but wants an evaluation, they are going to have to make an appointment at the JHTMC. And no one is going to get past Phylis without getting into the queue on the calendar and also without the proper insurance. And Phylis makes no exceptions for anyone; the President and the Pope will be treated in exactly the same fashion as you and I. Phylis is the gatekeeper's gatekeeper. And I mean that in the most respectful and positive sense of the concept, Phylis.

I often receive phone calls or email messages from people who are seeking a diagnosis. They have a collection of symptoms and have not been provided with a diagnosis or they have been offered a tentative diagnosis, but the physician is not certain. They provide me with a description of their symptoms and a history of their illness and their experience with the medical community. I let them know that it is imperative that they get a definitive diagnosis for their condition. I recommend them to a neurologist who specializes in MS. I recommend them to one of our medical advisory board physicians or one of the TM consortium physicians, if there is one in their area. I also tell them that if they can get it covered by their insurance, it would be worth their trip to the Johns Hopkins TM Center in order to have TM definitively ruled in or out. Most of these people have very challenging cases, i.e., there has been a gradual development of their symptoms without the identification of an underlying cause; or the person was in a car accident or sustained a back injury at work; or they had some type of back surgery which preceded the onset of their symptoms; or their symptoms began after receiving an epidural. I tell the person that there are many different conditions and diseases that are associated with the symptoms of TM. I remind them that I am not a doctor and am not able to make a diagnosis, and that even if I was a doctor, they wouldn't want for me to make a diagnosis over the telephone or internet. When this happens to a person in a major metropolitan area, I know they are going to have a challenging time getting their condition diagnosed. When they live in a small rural community, I know that they are going to need to travel in order to have a challenging time getting diagnosed. And some of these people are not covered by health insurance. Have I mentioned that my job becomes overwhelming at times.

And then I get a lot of questions for which there are answers, but for some reason the person asking me the questions doesn't have any of the answers or they are not satisfied with the answers they are getting. I then begin the process of figuring out the nature of the issues involved.

If the person describes the responses they are getting to a question or questions from their doctor, and this information makes sense, I try to get a sense from the caller as to why they have doubts about what they are hearing. First, how do I decide that the information makes sense? I base my decision on what I have read in the journal articles, what I have read in the newsletters, what the physicians have told me, and what I have learned from the symposia. I always repeat what I have been told or read; that is the only basis I have for this decision.

There are people who shop for an answer when the answer they get is not what they want to hear. If a person has had the demyelinating episode, and during the episode they were treated with steroids and/or plasma exchange, and then their doctor says, "well, that's about all we can do for now; we just have to see what nature does from here," there are some people who do not want to accept that notion. I don't blame them. Who wants to hear, "we have run the course on all of what we know to do to help you; the rest is up to your body's ability to heal and recover and the blessings of a higher power?" So, some people begin a hunt for a better answer. Hey, let's call the guy in the kitchen from Ohio; he'll know. Well, I don't know anything, but you can't have more compassion than I have, and the caller is going to know that I genuinely hurt for them. They get what I do know - which is what I have read and been told by physicians - and I repeat what I have read and what I have been told. I send them to the web site to read Dr. Lynn's Q&A column about the treatments for demyelinating attacks; it is a short list of options. I work my brains out to help them feel comfortable with where they are; I encourage them to get help from their family and friends, from clergy, from a professional, and from the community of people who have been through this same experience. And I extol the great virtues of a positive attitude and how that attitude might actually impact and help their recovery. And I talk about the importance of seeing a physiatrist and physical and occupational therapists to have a rehabilitation program established for them.

And then there are some people who get confusing or incorrect information from their physicians. There is no part of my job that is more difficult or causes me more discomfort than having to disagree with what a physician has told a patient. They have the medical training and knowledge and experience; they are the professionals; I'm an idiot in my kitchen. But it happens.

Some people call me and tell me that they were given a diagnosis of TM by a neurologist, and then they were told that there is nothing more that can be done for them; they just need to deal with their new life and get on with it. The person doing the calling is almost always concerned that they are no longer getting medical care from the neurologist. I ask them when their symptoms began, when they were diagnosed, and their current symptoms. I also do some mental and conversational gymnastics to be sure that they understood their neurologist correctly, that they were being told that they should not come back for another appointment? If I hear that they are certain, we go from there. I am always amazed at what I hear from this group; they aren't urinating or completely emptying their bladders, they have nerve pain, they have spasticity, they have all sorts of issues. Some of them are not taking any medications for their symptoms and some of them have not been referred to any specialists, such as urologists or physiatrists. I tell them that they can get treatment for their symptoms and that they need to get treatment for their symptoms. And I provide them with information about getting established with a different neurologist, and the other medical professionals they should rely upon.

And then some of the information people get from their doctors or therapists is both wrong and truly unhelpful. I have received calls from people who have recently completed intensive therapy at a rehab center who have been told that they are never going to walk again. I ask them to describe for me the duration since the onset of their symptoms. It is disheartening to me that a doctor or physical therapist would communicate this statement to a person after only a few weeks or a month or so from the onset of their condition. Of course, the person with TM and their family are dismayed by this pronouncement. Again, I am in the uncomfortable position of having to provide conflicting information to what they are hearing from a medical professional, but as reluctant as I might be about doing so, I cannot in good conscience allow this information to go unchallenged. I tell them that at this stage, no one can really know. I tell them that, at the present time, there are no definitive predictors of outcome for TM. (I've read the stuff about spinal shock, back pain and catastrophic onset being predictors of poor outcome. I know of so many exceptions to this statement, I'm not sure what to do with it). Besides the fact that no one can say whether they are going to walk again or not, what is the point of demoralizing a person who faces months and months of difficult rehabilitation and significant emotional, social and psychological adjustments in their lives. I talk to these people about the possibilities that they might not have a good outcome, but that it is too early for anyone to know. I encourage them to use the possibility that they can have a good outcome as motivation to work hard and I talk about the positive benefits which accrue from physical therapy. And I always communicate the perspective that a positive attitude is going to make a difference for them, regardless of their outcome.

Some people do not receive good information because they are not communicating effectively with their physicians. So, we often explore this area, as well.

The physicians who are treating people with TM often spend a long time examining and talking to their patients, because there are numerous and complicated symptoms associated with this condition. Some people will go through an examination without offering any information to their physician and without asking any questions. The physician is given all of the responsibility for getting it all figured out. It is just not realistic to hold your physician accountable for asking you about every single area of possible concern. You are being treated by a physician with whom you have a relationship, and as with all relationships, you have some responsibilities as well as rights. You need to help them get it figured out.

Some people just do not come prepared for their appointments. It is very important to come to an appointment with your questions and concerns organized and written out. Doing so will facilitate effective communications, you will get more accomplished in a shorter period of time and you will maximize the information you receive from your physician. I go to doctor appointments with a list of questions, and I have never had a doctor either rush me through a list or ask to leave before I completed my list. They are going to appreciate that you took the time to get organized. Given the importance of your appointments, why would you not take the time to get organized.

Some of this organization should be going on during the times between your appointments. In some cases, keeping a journal is an effective approach for remembering any changes in your symptoms. For instance, some people have a very difficult time describing their pain over time, and the circumstances surrounding when their pain is the most and least severe. Keeping a journal about pain or bowel or bladder urgency, or fatigue or spasticity or any of your other symptoms may make it easier for your physician to understand what has been happening to you, and may provide them with significant insights that might result in more effective treatments. Are there times of the day when your pain is worse than others? Is the intensity of pain associated with certain activities or with different temperatures? Is there a relationship between when you take your medications and the intensity of your pain? It may also be a good idea to come up with your own rating system for pain intensity and refer to this rating when you are describing the various circumstances that might influence your pain. How can this information not assist your doctor in providing you with better treatment.

There are people who are so emotionally overwhelmed by their experience, that they cannot get themselves gathered together enough to ask questions. And there are some people who are introverted or timid enough in any social interactions, including with a physician caring for them, that they are uncomfortable asking questions; they'll faithfully and intelligently respond to a question, but they won't ask their own. It is not easy to get to these issues in a phone conversation with a person who you are speaking to for the first time, but I do get to these issues with some people, and I am able to encourage them to try to be more effective communicators with their doctors. Going in with the list of questions is a good technique for people who are reticent to share their feelings or ask their questions. And I tell them that they can always write questions out neatly and hand them to the doctor to answer for them.

And then there are questions that are very difficult for a person to ask; and there are also issues which some physicians are not entirely comfortable to discuss. Hey, they're human; really, they are. As I noted a few volumes ago, Pauline and I never had sexual dysfunction discussed in a doctor's office until we raised the issue ourselves. There are some subjects you are going to have to initiate if you are going to obtain good information from your physician. My guess is that they will wax philosophic for hours about spasticity, fatigue, nerve pain, and paralysis without your having to say a word. If you want them to discuss your bowel incontinence or your inability to have an orgasm, you might have to take the responsibility for broaching the subject. This information is critical for you; I know it is cause you are talking to me about it, and I'm an idiot. Why not discuss these issues with someone who went through medical school?

We filter all of life experience through our own experiences; that is one of the more significant ways that we make sense of any experience and give it meaning. This is also a way that we bias how we apply meaning to experience. My most intimate experience with TM is Pauline's experience. It is a very natural and normal tendency for me to make sense of everyone's TM experience by comparing their experiences to the experiences that Pauline has had with TM. I can use Pauline's and my experience with TM to feel empathy and compassion. I resist as much as I am able the comparison of all experiences with TM to Pauline's experience. What happened to Pauline does not happen to everyone with TM. What treatments have worked for Pauline are not going to work for everyone with TM. She cannot be the model by which I think of everyone who calls with questions. If I constrict other people's situations into Pauline's experiences, I am taking a biased, limited and perhaps incorrect perspective on their experiences.

I receive more calls about pain and pain management than any other symptom. It would be very easy for me to talk to people about Pauline's pain, which can be severe at times, and how she is being treated. That is, of course, always the first thing that comes to mind in these conversations. But I resist focusing on Pauline's experiences, because in the first place, I have no idea what is causing the caller's pain. How could I possibly think about or suggest a treatment. And, even if I could be certain about the cause of their pain, what treatment works for one person, may not work at all for another. We do talk about Pauline's experiences, because I believe that sharing anecdotal experiences is important. But the focus of my conversation with them concerns the reasons as to why they are not being effectively treated for pain by their physician. We talk about various options for receiving medical treatment for pain, including from neurologists and pain centers. And I direct the caller to the many sources of information on the TMA web site that address pain management. I communicate that it is important that once the cause of their pain has been identified, the more they know about treatment options, the better they can advocate for their care. And I implore the caller to find a physician who will take the time to work with them to find effective treatments for their pain.

When I am called by people who are experiencing bladder problems, I encourage them to discuss their issues with their neurologist and to seek an evaluation with a urologist. I don't automatically assume I understand the cause of their bladder problems; it could be from nerve damage caused by their demyelinating attack, or it could be that their prostate is the size of a grapefruit. How would I know? I tell them that there is excellent information on our web site about bladder issues, I direct them to this information, and I talk through with them how to find the best medical care for their bladder issues.

People get TM from infancy into old age. Completely healthy people get TM, and people with previous health problems get TM. A physician doing an evaluation, medical history and examination is going to assess the whole person, not just their spinal cord. I can't treat symptoms, because I do not know the cause of the symptoms, and I'm not a doctor, so the only thing I am comfortable prescribing are good techniques for finding a doctor and communicating with a doctor.

I also receive phone calls and email messages from people seeking advice about alternative treatments for their symptoms. The questions involve everything from acupuncture for the treatment of parasthesias and pain, to any benefits that might accrue from going to a chiropractor to the use of supplements that have an influence on the immune system. Pauline is my wife; I am perfectly comfortable offering her my opinions about her reliance on other-than-medical treatments for her symptoms. She has benefited greatly from taking tai chi, and she is planning to sign up for a yoga class this summer. I believe that she will derive great benefits from taking yoga; any opportunity she takes to focus on her body as opposed to focusing on all of the things I have done to irritate her during the week is a very healthy use of her time. If she wanted to take a supplement that would somehow influence her immune system, that would make me really uncomfortable. The primary function of the immune system is to distinguish between self and non-self. For some reason, Pauline's immune system did not function properly and it attacked self. No one presently understands why it did that. Why would I be comfortable with Pauline wanting to treat her own immune system? If she is going to devote her life to curing something, she might want to start with my neuroses and leave her immune system to the medical professionals who do research that is ripped to shreds in a peer review process.

I strongly suggest to people that before they incorporate any kind of alternative therapies into their treatment regimens, they should discuss it thoroughly with their physicians. My guess is that most doctors will not wholeheartedly endorse some therapy for which there is no evidence that there is an effective benefit. If the therapy is, at its worst, benign, they may be all right about you trying it. But they will give you some feedback on whether it could cause you some potential harm; and you need to hear that from your doctor. I recommend to people that they shouldn't make these decisions on their own without consulting their doctor.

I try to remind myself that I get a lot of phone calls because people with TM and their families are often frightened and confused, they are seeking the answers to their many questions, and my telephone number is very easy to find. If they could call their doctor every time they had questions or concerns, they wouldn't be calling me. When was the last time you called your doctor's office and had the doctor answer the phone? There are so many gatekeepers in doctor's offices today, that you have to go through a gatekeeper to get to the person who mails you the bill. I remind myself every day that I am in demand not because I know; I am in demand because I answer the phone.

So, let's review my focused and concise list of guidelines for providing information without offering medical advice:

Do not diagnose disease or disorders.

Do not prescribe medication or treatments.

Remind people that you do not have medical training and the more authoritative and credible you sound, the more often you need to remind them of your amateur status.

If you do have medical training, be sure to communicate to people that while you are a medical professional, it is not professional to provide specific advice to people without taking a medical history and conducting an examination.

Be sure to communicate that there is great variability between the different neuroimmunologic disorders and between the various manifestation of symptoms. While there are similarities between individual cases, your case is not the model for all cases, and the treatments that have been effective for you are not going to work for everyone. There is not a one-size-fits-all approach to the treatment of symptoms; there is often much trial and error involved.

We should help people to be more effective advocates for their treatment and care. One of the best ways to accomplish this is to become a well informed patient. We should be focused on providing people with information we know is good information about TM. Have people thoroughly review the information on the TMA and the JHTMC web sites. If you are going to talk to people about specific symptom management issues, it would be a good idea for you to know what information is available on the web sites, so that you can direct people to specific articles or presentations.

We should be helping people find good medical treatment from medical professionals. If you are receiving good care from your neurologist and they know TM, sharing that reference with the others in your support group is a great idea. It is also a good idea for you to know the names and locations of the physicians on the TMA medical advisory board and the TM consortium; we should be referring people who are seeking good medical care to these physicians. The TM consortium physicians are identified in the TM Consortium Working Group article, "Proposed diagnostic criteria and nosology of acute transverse myelitis." A copy of this article was reprinted in the TMA Volume 5 Issue 1 Special Section.

We should help people to be more effective communicators with their physicians. Any advice we can offer to assist them in that process is going to be of tremendous benefit to the person with TM and their caregivers.

Help people find good information. Help people to understand that just because they read it on the internet, it doesn't mean it is correct or accurate. Always evaluate the source of the information and always weigh its value against its source, as well as the process that surrounds testing the veracity of the information being presented; i.e., information published in a peer reviewed medical journal vs. information posted on a bulletin board.

Please don't tell people stuff to do like you heard it at the burning bush this morning.

Be sure that people understand the full range of medical professionals that can be involved in the management of symptoms, i.e., neurologists, urologists, physiatrists, physical and occupational therapists. And be sure that people know that the physicians who understand TM best are neurologists who specialize in the treatment of MS.

Remind people that not everything that is happening to their bodies can be explained by their neuroimmunologic condition. They still need to have a regular examination, for instance, by their GP or gynecologist or pediatrician.

Sharing experiences is important and helpful, showing empathy and compassion is critical. Help people to understand that they do not have to go through this difficult experience alone. Be sure they know that there are thousands of people across the country and around the world who are offering each other support and encouragement. They are providing this support in their local communities, on the tmic, on our bulletin boards, in our support groups and at our workshops and symposia. Be sure that they join The Transverse Myelitis Association. Tell them its free, there are no membership fees. And then tell them that it would be a great idea and we would be eternally grateful, if they would raise millions of dollars for TM research.