From the Editor
Sandy Siegel

Many people with TM experience an exacerbation of symptoms. These exacerbations can be quite dramatic and severe, and they can occur at various intervals and may last for different periods of time. For instance, a person may have quite stable symptoms after their recovery from the onset of TM, and then after months and months, or even many years, their symptoms can significantly worsen. Having an exacerbation of symptoms does not mean that you have recurrent TM or Devics or MS. In order to receive a diagnosis of these diseases, you would need to have tests performed that rule in that you have experienced a new demyelinating attack in your central nervous system. Fortunately, it appears that only small percentages of people with TM experience multiple episodes of distinct and different immune attacks. The exacerbations I would like to discuss in this column have to do with a worsening of a person’s symptoms that are not brought on by a demyelinating attack. These are exacerbations of symptoms that do not appear to result from any new destruction of myelin or nerve tissue.

So much about TM is not well understood. The issue I am writing about in this column is perhaps one of the least understood issues from among the broad spectrum of little understood issues about TM. And that’s probably why I am writing about this issue as opposed to one of the physicians. And I don’t blame them. I’m not particularly comfortable writing about it either. Doctors do not want to communicate information that does not have a basis in fact – that means based on peer reviewed, published research and/or well described and published clinical cases. I am not aware of any published literature on this subject and TM. But I know it goes on, and it happens fairly frequently to relatively large numbers of people who have TM and who have not experienced a full recovery – people who have significant residual symptoms from their onset attack and after their recovery.

And this is an important point. I have no idea what happens with people who have completely recovered from TM. I, perhaps, have the most skewed perception of the population of people who have TM. People who have fully recovered from TM are not looking for a TM support group in the same way as people who have difficult residual symptoms. Many of these people are likely not looking for a support group at all. So, every time I read the statement that a third of the people who get TM have a good recovery from it, I’m always thinking that I would love to meet some of them. Thus, my experience with the fully recovered is minimal, and I don’t know if they have exacerbations.

One of the most intellectually difficult and emotionally challenging issues I deal with in my many communications with people from the TM community concerns whether a person is having a recurrent episode of Transverse Myelitis. I receive phone calls almost every day from people and many email messages every week from people around the world. From these contacts and requests for information, there is usually one person, and often a couple of people, who are concerned about why their symptoms have worsened after they have had some recovery from their onset episode of TM. Some of these people express a concern that they might have recurrent TM.

These conversations are emotionally challenging because people who have had an episode of TM and think that they might be having another episode are always emotionally distraught. The thoughts and feelings a person has about the possibility of having to relive this experience are so traumatic. On more than one occasion, Pauline has said to me that she wasn’t sure she could go through that experience again. It really makes me appreciate what kind of emotional resolve a person with recurrent TM or Devics or MS must possess to handle the issues they have regarding their well being and their potential futures. And I talk to these people all the time, and their emotional and spiritual strength is really so inspiring to me.

These conversations are also intellectually challenging, because I have quite difficult choices to make in what I say to these people and how I say it. First and foremost, I am not a medical doctor, so I am not about dispensing medical advice to anyone. Secondly, even if I were a doctor, I would not be making diagnoses or prescribing treatments over the telephone, without reviewing complete medical histories and performing a comprehensive medical examination.

These people are calling me with their concerns, because they are faced with some interesting dilemmas; they are caught between some difficult choices. It is not always easy to get in to see a neurologist for an emergency appointment; some physicians are more responsive than others to this type of emergency. And someone who thinks that they are having a new episode of TM does indeed have an emergency situation, because we have learned that a person experiencing a demyelinating attack needs to be treated as quickly as possible.

Many people with TM have not had stellar experiences in the emergency room from their onset episode of TM. The idea that they might have to go to an emergency room and explain that they have TM, which is complicated enough, and then have to explain that they might be having another episode of TM can be a daunting consideration.

Some people communicate that they are being seen by a general neurologist, as opposed to a MS specialist, who has little experience with TM. They are concerned that their having to explain that they might be having another episode of TM may not be well accepted or understood by their physician.

As I have said previously, I know that people are calling me because I answer the phone. I can’t tell them what is wrong with them; I would have no idea. I can help them to feel less frantic about their situation and can help them through their decisions about what is a reasonable course of action; all of which entail getting physicians involved as quickly as possible.

I have been dealing with this issue regularly enough that I have finally decided that I needed to write about it. I am concerned about what I say or how much I say, because I am always very sensitive to the fact that I am the idiot standing in my kitchen in Ohio. But I think it is important for me to discuss this issue and get this out there for all of us to think about and talk about. And we need to encourage our physicians to think about this issue. This issue needs to be recognized, because it is happening to significant numbers of people. We need to help people think about what is happening to them, how they might approach it emotionally and what course of action is appropriate and reasonable.

I am going to make a distinction between an exacerbation of symptoms and a new demyelinating attack. This is my terminology; I have no idea how physicians might refer to this differentiation, if they are making it. I know this is complicated; I’ll write really slowly. People who have recurrent TM, or Devics or MS have different and distinct episodes of demyelination from a new auto-immune attack. Something triggers the immune system to go haywire … again. In the cases of recurrent TM, there may be new symptoms involved for the person, if the level of attack is above the previous episode or episodes of demyelination. For instance, there may be upper body involvement from the new episode that was not experienced during the first or previous episodes that might have occurred at lower levels of the spinal cord. The only way to know whether a person is having a new episode of demyelination is to go to a neurologist and have him/her perform all of the tests necessary to rule in or out the evidence of a new inflammatory attack. During a new episode of TM, a person who recovered from bladder problems may lose the ability to urinate again. A person who recovered muscle function in their legs, might lose that function again. Any appearance of new symptoms would depend on the level of the spinal cord impacted and the severity of the attack.

Most people who have TM and who have not experienced a complete recovery can have an exacerbation of symptoms. What do I mean by an exacerbation of symptoms? If you have spasticity, the spasticity worsens. If you have nerve pain or paresthesias, the pain or paresthesias can worsen and become more intense. For instance, you might have had tingling in your feet from the onset of TM. Upon experiencing a good recovery, the tingling in your feet might have disappeared for years. With an exacerbation, the tingling in your feet might return. You might have been paralyzed at onset and recovered over time to where you had movement in your legs but had muscle weakness. During an exacerbation, the weakness could become more pronounced; maybe almost to the return of paralysis. Exacerbations can impact any of a person’s TM symptoms, but it does not necessarily affect all of their symptoms. For those people who experienced an acute and severe attack from TM at onset, the exacerbations can be similar to the onset of their symptoms or can “feel” similar to that onset. This is the reason that this experience is so traumatic and stressful for people. For many, it involves reliving these most horrible and difficult episodes in their lives. And the fear that this could be happening again is very intense.

The bad news is that these exacerbations are real; the symptoms are real, and this happens to a lot of people with TM. The good news is that the vast majority of these people do not have recurrent TM or MS or Devics and they are not having another demyelinating attack. After some period of time, usually a short period of time, they are going to return to their previous level of recovery; where they were when the exacerbation started. The spasticity will settle down or they will regain the strength in their legs, or their nerve pain or paresthesias will quiet down and improve.

I learned about this experience first from Pauline; and she experienced it in much the same ways that most of you experience it. The first time she got the flu after her recovery from her onset TM symptoms, the nerve pain she has in her feet and legs became quite severe. Her bladder urgency also worsened considerably. We have since learned that any kind of illness that involves her immune system ordinarily makes her symptoms worse. We know that as her immune system quiets down; her symptoms will also improve, so we do less freaking out about it than we did when it first happened to her. At the same time, there are certain things we monitor and pay attention to in deciding how to manage these events; including when it is time to call and involve the physician. And I’ll get to that momentarily.

Differentiating between an exacerbation of symptoms as opposed to having an episode of recurrent TM is critically important. People who have recurrent TM are often treated with the same type of medications as people who have MS; they are treated with the immune modulating drugs due to the possibility of multiple episodes. These medications help to delay future episodes and tend to lessen the severity of episodes should they occur. People who have exacerbations are not placed on these medications.

What triggers an auto-immune attack in MS or recurrent TM or Devics? I haven’t the slightest idea. Remember, I’m an idiot. Having said that, I’m not sure anyone else has the answer to that question. But it happens, and I know that there is a lot of research going on to find the answer; there is MS money going into finding the answer or answers, and this research is going to help people who have recurrent TM and Devics disease.

What triggers an exacerbation? I have even less of an idea about exacerbations. Why would some compromise of the immune system make symptoms that are caused by nerve damage worsen – when there is no additional damage being done to the nervous system? Okay, I wrote that really slowly, and I even confused myself.

I’d like to relate an experience I had not too long ago. I have been in contact with a number of people who have recurrent TM; I have asked some people to write articles for the In Their Own Words column so that I can share these experiences and this information with our readers. I received a wonderful article from a gentleman who has had a very difficult lifetime of experience with TM and was given a diagnosis of recurrent TM by a neurologist. I read his article and was really touched by his experiences. This gentleman got TM at the age of ten and was paralyzed from the waist down. He experienced a good recovery from his onset symptoms over a period of time. At the age of 17 he experienced an upper respiratory infection and in the environment of this infection, he once again developed symptoms that were similar to his onset. He was treated with steroids and had a good recovery. He experienced this cycle of infection, recurring worsening of TM symptoms, getting treated with steroids and then having a good recovery a couple of more times in his adulthood. He was eventually given a recurrent TM diagnosis and was placed on one of the MS drugs. Upon completing his In Their Own Words article, I was immediately concerned with what I had read. First, I am not aware of any young child who got TM and then developed recurrent TM. In other words, I am not aware of a case of recurrent TM where the first episode was experienced in early childhood, and the age of ten certainly fit into my thinking about what was childhood. Secondly, seven years was a very long period of time between episodes for recurrent TM. Most people with recurrent TM have a second episode within months of the first episode or at the most a couple of years afterwards. Seven years would have been way outside of any interval I had ever heard about. And, finally, what heightened my greatest curiosity about this person was that every exacerbation of his TM symptoms was experienced in the context of some kind of upper respiratory infection.

I thought about sharing my concerns with this person, particularly because he was prescribed an immune modulating drug when he got his recurrent TM diagnosis, and if he doesn’t have recurrent TM, it is probably a really good idea not to be messing with his immune system. But I didn’t want to say anything to him without first discussing my concerns with someone who was in a better place to think about this issue; someone who is not an idiot. I presented the basic facts I had to a physician I have great trust in. This person confirmed that my suspicions were at least worth communicating to the person.

So, I called this gentleman, and after beginning the conversation with a reminder that I am an idiot, I shared my concerns. I asked him whether any of his subsequent ‘episodes’ after the first one when he was ten years old were confirmed as a demyelinating attack with an MRI. He wasn’t sure, but he didn’t know for certain that they had been. I suggested to him that it would be a good idea for him to discuss this with his physician and particularly with the doctor who gave him the recurrent TM diagnosis. I told him that if he did not have his second, third or fourth episodes confirmed as demyelinating attacks that it was certainly a possibility that he didn’t have recurrent TM, and that his exacerbations could be explained as being triggered by his upper respiratory infections.

There was a 12 year old who got TM and had experienced a good recovery from her onset symptoms. She had been paralyzed from the waist down and had lost significant function below her waist. Over a period of a couple of years, she was able to walk. A year or so later, she got the flu and shortly thereafter, she became paralyzed from the waist down. She was immediately given all of the tests to rule out a recurring episode of inflammatory attack in her spinal cord. It was ruled out. She recovered from her paralysis shortly after she recovered from the flu. And as with the gentleman I described previously, her recovery was similar to the point of recovery she had experienced from her original onset symptoms.

What is the connection between an upper respiratory infection and exacerbations of TM symptoms; how should I know; I’m an idiot. But I know something is going on, because it is happening to people.

Are they experiencing new demyelination and damage to their spinal cords? It doesn’t seem like they are; I have not heard of any of these people diagnosed by an MRI with a new inflammatory attack. Why would an infection or the flu or serious cold symptoms trigger the worsening of TM symptoms? Why would a bladder infection or an upper respiratory infection or any kind of illness make a person’s muscles become weaker, or make spasticity worse, or bring on bladder or bowel incontinence that may have been fairly stable and improved for a long period of time? Why would these infections and other illnesses trigger tingling and other paresthesias that had been fairly stable and improved for a long period of time? Why would these infections and illnesses trigger a significant worsening of nerve pain? Why would stress to the immune system impact symptoms, if the nervous system is not impacted or there is not more damage being done to the nervous system? Okay, I’ll stop.

I really wish someone had the answers to these questions, because then someone could come up with a treatment for it. Or for now, could at least acknowledge for people that it goes on, and get me an extra hour or two in the evenings that I can use to focus on the news so I can aggravate myself about what’s going on in the world. Hey, what are all of you people doing out there; please cut it out. Be nice.

It doesn’t appear that these illnesses are causing new nerve damage. And it doesn’t appear that these illnesses are triggering the development of new symptoms; those two statements are consistent and logical. People who experience these exacerbations experience a worsening of symptoms that they had from their onset episode. A person who never had spasticity is not likely going to develop spasticity from an exacerbation. A person who experiences these exacerbations is not likely to develop a new level of sensory deficit from their onset of symptoms. If your onset immune attack was at the T10 level of your spinal cord, the exacerbation will likely involve symptoms that relate back to this same level as the original, and only, demyelinating attack. And it also appears that a person who experiences an exacerbation is likely going to recover to the level of recovery they experienced from the original onset of TM.

I am certain that there are exceptions to what I am writing. How do I know that? Because I never write about anything that doesn’t elicit someone writing to me saying, “hey, that’s not what happened to me.” There are things that generally happen in cases of TM, but there are definitely exceptions to everything. I don’t have a handle on what the “garden variety of TM” looks like yet. With just 34,000 cases in the U.S., and with all of the various potential causes, and with the multitude of onset experiences from acute to slowly progressing, and from the differences which seem to be present in cases between adults and children, I’m not sure we’re going to get a garden variety of TM.

If you know of a child who got TM and then developed recurrent TM, please get in touch with me and let me know. I really don’t want to hear this, but if there is a case, I need to know; and recurrent means that there have been substantiated, diagnosed cases of more than one inflammatory attack in the spinal cord.

When Pauline has a cold or the flu, her nerve pain, bladder urgency and muscle weakness become markedly worse. I know this is going on with people; I hear about it all the time. And to my knowledge, they all recover soon after their cold or flu symptoms are gone.

Okay, while I’m out dangling on this limb, I’m going to crawl out a bit further to where the branch gets really flimsy. I know that people’s symptoms worsen under a number of different circumstances besides in the environment of an infection or cold and flu symptoms. I have heard people describe a worsening of symptoms from experiences with high stress and fatigue. Stress is an exceedingly difficult variable to consider, because it is difficult to find a time when stress is not present at some level in our lives. But recognizing the endemic nature of stress in our lives, I know that Pauline’s symptoms are worse when she is working on her report cards and preparing for parent-teacher conferences as opposed to the middle of summer vacation when her most significant decisions involve whether she should spend the afternoon making me a pot roast versus ironing all of my shirts.

I am regularly contacted by people who are experiencing high stress at work or have recently experienced a significant tragedy in their family and are concerned, because their symptoms have become much worse. I have no idea why this happens, but I’m pretty sure it is happening. Is it possible that stress is compromising the immune system in at least an analogous manner to an infection? That is conceivable to me; for whatever that is worth.

We need to acknowledge that this exacerbation thing is going on. And we need to pay attention to the variables that could be triggering these episodes. I have a good sense that infections of all varieties, including those that might result from having the cold or the flu could be involved. I have a sense that inordinately high stress and fatigue can trigger these exacerbations. And I also have a sense that other stuff could trigger these exacerbations. I have heard people talk about changes in the weather or having to deal with extremes of temperature. I would imagine there are all kinds of things that could trigger a worsening of symptoms.

It is also important for me to acknowledge that this discussion about exacerbations should be considered within the context of the very dynamic nature of TM symptoms. People’s symptoms change all of the time for a multitude of reasons. The idea of stable symptoms is a relative concept. And that, by the way, is why it is a good idea for people with residual TM symptoms to be examined by a neurologist or a physiatrist once a year, in much the same manner people schedule a physical exam with their family doctor. An exacerbation would represent a change in symptoms that is more significant or more pronounced or more severe than the more day-to-day changes that many people experience with their TM symptoms.

So, what are we supposed to do with this information? Well, one thing you can do with it is relax a bit. You likely don’t have recurrent TM and you are not likely to get it. And even if your symptoms get worse on occasion, it is not likely happening from a new inflammatory attack. And if you do have an exacerbation, as I have described in this column, you are very likely going to experience a return to the recovery you experienced from the original onset.

So, let’s return to the dilemma. I get a call from someone who thinks they are having a new attack and that they could have recurrent TM. Well, the only way to know for certain is to get to a medical doctor to begin the process of ruling it out. There’s no other way to do it; because they are not going to get any great answers from me. But here is what they are going to get from me.

I’m going to ask them if they have a cold or the flu or a urinary tract infection or upper respiratory infection. If they tell me that they do not have any infection or illness, I ask them to describe what their current symptoms are. When they finish their description of symptoms, I ask them if any of these symptoms are different from the symptoms they had when they experienced the first onset of TM and if the level is any different. For instance, is the sensory level or functional level higher than it was at the first onset? I also ask them if there are parts of their body that are impacted that have not been involved previously in their TM symptoms. If they tell me that they don’t have any other illness and that they have new symptoms or that they are unable to urinate, or that the sensory or functional level is higher than onset, I suggest they print Dr. Kerr’s three articles from our web site, and then head to the nearest emergency room of the hospital that is associated with a medical school that has a MS Center with the articles in hand. And then I ask them to call me as soon as they hear something or if they need some assistance.

If they tell me that they have had the flu or a bladder infection and that the symptoms they have always had are worse than they have been for a while, I suggest that this might not be something they need to be really worried about. I tell them that they should make an appointment and to try to get in to see their neurologist as soon as possible, and let their neurologist know about the change in symptoms. This is something everyone should pay attention to; if you experience a dramatic change in your symptoms, this is something your physician needs to hear about. Telling me about it might make you feel better for a couple of minutes, but I’m not going to do anything highly beneficial for you. Your doctor needs to know this and needs to think about what’s going on, and then needs to start ruling some things out. I am woefully inadequate in all of those realms.

Part of this journey with TM involves getting to know your body. It is important to develop some sensitivity, skill and experience about when something minor is going on that can be ignored, versus when something significant is going on that you should monitor for further action versus something really significant that should trigger an immediate contact with your physician or a decision to go to an emergency room. This isn’t easy; this isn’t easy for any of us. I grew up in a family where there is serious cardiovascular disease; it is a multigenerational problem that is pervasive. My brother and sister and I have all made appearances in emergency rooms with serious cases of heartburn; even from a fairly early age. We laugh about it now, but it is one of those really ironic kinda laughs, because we share the nightmare about gasping desperately for our last breaths while we’re chewing on a Tums.

If you have any doubt in your mind about what you should do if your symptoms change, you need to contact your doctor. If you are experiencing new symptoms, severe symptoms, or symptoms that reflect a different or higher level of impact on your spinal cord, you should contact your physician and if they are not able to see you immediately, you should probably go to the emergency room, with Dr. Kerr’s three articles in tow. If you are experiencing sufficient doubt about your symptoms that you think you need to tell me about it, call your doctor, and tell him or her. I’m just going to repeat what I’ve said in this article. And if you call me right now, you’re probably going to have to listen to me complain about my life for an hour before you get a chance to say something to me about your problems. Pauline and I are in the process of remodeling our house to make it accessible. So, every room in our house is in the process of being demolished and renovated. We are living in a construction zone with one toilet, no shower or bathtub, and our lives are sheer unadulterated dirt and chaos. I’m in dire need of a support group. So, call Chitra; I don’t think she’s sharing her toilet with a construction crew.

While I’m venturing out on the limb, I might as well make my way out to the very end. I have talked to some people who have had exacerbations that occurred in the environment of an infection; there might have been some relationship between their exacerbation and something that could have been going on with their immune systems. Their doctors put them on steroids for a short period of time, and they seemed to improve. I am not prescribing steroids for exacerbations; I am not a doctor and I do not prescribe anything. I am suggesting to you that this is something you might want to talk to your doctor about should you be having the type of exacerbation I have described in this column. It is certainly something to think about.

So, don’t get sick and don’t have stress. Or be aware that the consequences of being sick are more serious for you today than they were before you had TM, and practice more diligence about avoiding colds and the flu. Wash your hands a lot; practice extra care and cleanliness in the bathroom and kitchen, and use every ounce of common sense you have about these matters. As for stress, lighten up. It is a fact that stress is endemic in our lives and we only have so much control over avoiding it. But we are not passive recipients of every stressful situation that comes our way. We can make choices in our lives which minimize stress, like, hey, Pauline, let’s demolish every room in the house and remodel it. And let’s live in the house while they do all of the work. And let’s share this teeny bathroom with a contractor and his crew and the electrician and the plumber and anyone else who comes into the house. Hey, do we know who all of these people are who are roaming around our house? Okay, you’re on your own with the stress thing. I’ve got way too much stress to be talking to you about stress reduction. Just deal with it the best you can. Hey, Pauline, what happened to the electricity and what’s that smell and is that dirt … what is that … is it moving … is it alive?

Please take good care of yourselves and each other.