A Journey of Teamwork

Physical therapists have certain expectations for themselves, and from others.  We specialize in the human body, including restoring it, managing or preventing conditions, and achieving the patient’s best physical condition given the person’s current state.  So what happens when a patient is referred to us with a rare neuroimmune disorder that we have never heard of before?  Families are scared, and are looking to us for answers. So how do we treat these patients with conditions that are of the “unknown?”

Patients continue to teach medical professionals on a daily basis. I thought I would share one particular experience that has profoundly improved me as a clinician. Please note that not every patient responds to therapy in the same manner, so the recovery process varies for each individual.  What has worked in this case may be different for others given the presentation and severity of the diagnosis. 

I have had the pleasure of working with a family, whose 7-month-old son was referred to me after a diagnosis of Acute Flaccid Myelitis (or AFM).  According to the CDC, “from August 2014 to July 2015, CDC has verified reports of 120 children in 34 states who developed acute flaccid myelitis.”  With roughly 319 million people in the United States, that is .000038% of the population. Like most patients, I initially thought that I should be able to tell the family what to expect and exactly what to do. However, since this is such a rare condition that is still being researched, I quickly realized that is not what I am here to do. We are all in this learning process together.

The first thing all medical professionals should do when coming across a diagnosis that they have never treated before is to educate themselves. Thus, I did my research to find out what AFM was and how to go about treating it. Unfortunately, there is no treatment protocol, per se, and the long-term prognosis is unknown. No one is able to directly state whether or not these children will be able to walk again.

So, what next?

Although these rare diagnoses can be daunting, it is important to remember to treat what you know. The diagnosis may be new, but the impairments that come along with it are often impairments that we have seen before, and know how to treat.  Breaking down the diagnosis into structural and functional impairments will guide the treatment plan.

Along with treating what you know, it is just as important to know your limits and ask for help or other opinions when necessary.  Even if we are “pretty sure” we are doing all that we can do, it is best to get others opinions just in case there is something out there that we are not aware of. This is especially true with cases of rare neuroimmune disorders that we do not see everyday.  Asking co-workers, recommending consults with other disciplines, and really taking into consideration the input of others will help guide the plan of care. In this manner, we can expand our current knowledge, share ideas, and best treat our patients.

The patient and family are always our number one priority.  We need to be very cognizant of their emotional state throughout this process. Imagine a child who has met all of his motor milestones now all of a sudden loses all mobility from the waist down. This experience is incredibly traumatic and overwhelming.  Once home from the hospital and medically cleared, we step in to start outpatient services. The family is scared, and therapy is their hope. There are many things to discuss, and a long road ahead. However, it is important not to overwhelm them during this sensitive time; meet them where they are emotionally, and go at the family’s pace. Take the time to physically show them every small improvement that is observed; this can help them emotionally cope with their feelings of loss.

After researching AFM, I learned that intense physical therapy is the best treatment, after the acute treatments of steroids, intravenous immunoglobulin (IVIg), or plasmapheresis. Each medical treatment will vary depending on the individual.  Starting therapy services as early as a child is medically cleared to do so, will help to prevent atrophy and bone loss that can be seen with any paralysis. It is our job to advocate for these patients who do not fall within the normal protocols of therapy, and strive for multiple therapy sessions per week.  Advocate for these intense services, including getting other disciplines involved.  Or, recommend activities such as swimming, gymnastics, horseback riding, music therapy, and dance classes. I am fortunate to be working for an early intervention program, which gives children access to many different services. I know this is not the case everywhere, and that is why supplemental activities are important.  Any appropriate activity that challenges the body in different ways can be an option. Think outside the box in the treatment plan. After all, these children are 1 in 2.7 million — they are unique and their therapy services should be as well.

In addition to advocating for services, it is important to realize that we will not always be there with the family. Therefore, we need to empower the family to advocate on their own, and teach them how to do so.  Giving them the tools to advocate and know how to manage their child’s care is important, and it will make all the difference.  The patient and family will be managing the child’s care on a daily basis, and we need to make sure they are comfortable doing so. It is important to organize the child’s environment to promote therapeutic play throughout the day. A child will do whatever it takes to get to what he or she wants, which allows us to promote challenges in the natural environment. For example, if you are working on standing activities, help the family arrange their household environment so that all of the child’s toys are up high (on a table, easel, play kitchen, etc.). This makes therapeutic play more natural.

The child I see participates in seven structured therapy services per week, as well as therapeutic play throughout his day with his family.  This can be overwhelming for families, so guiding them on how to manage their time is beneficial.  Designate one person to organize the team, and develop a specific plan for therapeutic play or exercises, including what to prioritize. This can relieve a lot of the stress for families wondering where to start on their long list of activities.

With all of these services, the child is now 2 years old and walking with a posterior gait trainer. He has been receiving services now for over 1.5 years and continues to show progress on a weekly basis.  Patients may hit plateaus, so trying a different approach can be what is needed. That is not to say all cases should have these exact services or will see the same progress; as I have stated before, every patient’s road to recovery is different. However, advocating to give them the best possible chance is essential. The neurological system is an incredible and beautiful system that has the ability to regenerate for years to come with continued hard work.  It is never too late to start.

While thinking about writing this post, the one word that continues to pop up into my head is “teamwork.”  It is remarkable to watch so many people come together to support one patient on their journey with a rare neuroimmune disorder. Each individual is just as invested as the next.  I will never forget looking around at an appointment with over 10 medical professionals watching this now 2-year-old walk down the hallway. All of us were so proud of how far he has come, and hopeful of where he is going. We are regularly in contact with each other and discuss our ideas, questions, and concerns. The family’s perspective and priorities are always of utmost importance.  The families we serve are strong, and continue to unify us as a medical team.  This is what makes a success story.  I truly attribute the outstanding progress with this “unknown” diagnosis to the fact that every single person is working together in harmony to do whatever is necessary for this child to continue to grow and thrive as he deserves.

So, treating a patient with a rare neuroimmune disorder is not really scary. It’s something that we are all prepared to do if we take a step back, slow down, and work together to complete the puzzle.  It is a beautiful journey of hope, perseverance, teamwork, dedication, and love.

Jenna Elie, PT, DPT
Northeast Arc Early Intervention

Want to become a part of the team? We invite you to join our “Send a Kid to Camp” fundraiser. It’s the perfect way to support our cause and help a family get to our 2017 Annual Family Camp. Join us now! Your support really does help change lives! 

Chronic Pain From The Perspective Of A TM Sufferer: Experiences With Pain Doctors

My Horrible Experiences with Pain Doctors

Around 2010, I started to feel much l better. I realized that a long period of time, months had passed without any serious pain and sometimes any pain. I decided I wanted to try to reduce the amount of morphine I took or stop altogether. I spoke to different people about this including docs who didn’t give me much encouragement. One personal friend, an MD, told me he never met anyone who successfully got off morphine. I would have liked to go to Dr. Valdivia for help. Unfortunately, my work had changed insurance options and I had to find a new neurologist. I chose a doctor who was head of the neurology department at a teaching hospital. We got along okay. When I told him I wanted to get off morphine he suggested that I go to a pain specialist.

Pain Doc #1 was a referral from my new neurologist.  He was a very large man, well over 6 feet and 250 pounds. I am petite, 5 feet 2 inches and well under 250 pounds. (While I’ll tell you all about my bowels, I won’t tell you my weight.) My first visit was okay. I was shocked to find out that, even though it was my idea to go off meds, he made me sign a pain contract. Pain contracts vary from doc to doc but basically you agree to a variety of things:

  • Take a drug test each appointment or any time they ask while you are under their care
  • Use only one pharmacy and don’t change pharmacies without permission
  • Give permission for pain doc to access your medical records
  • Agree not to take more pain meds than prescribed
  • Not miss any appointments
  • If meds are stolen or lost get permission from pain doc to get a refill and provide police report if a burglary

At the first visit Doc #1 cut my pain meds approximately 25% and scheduled my next visit about two weeks later. I had a shaky two weeks, but complied.

On my second visit I brought my husband with me. Normally I do this for all important hospital visits as it is always good to have a second pair of ears especially when you are nervous. The Doc wanted to cut my meds another 25%. I didn’t think I was ready yet and asked if that could wait till the next visit. Instead of discussing the option with me he told he had stopped using morphine by going cold turkey. He spent several minutes of our short visit talking about his health. We also had the following exchange (to the best of my and my husband’s memory).

“If you don’t like my advice, I can just choose to not give you a prescription for any narcotics.”

I was shocked and said, “Don’t threaten me.”
“I’m not threatening you,” he answered.

My husband replied, “It appears to me you are threatening not to provide her any pain meds.”

Doc #1 got very huffy and suggested I seek help elsewhere which I was delighted to do.

Pain Doc #2.  I don’t remember how I chose the second doc. My visit with the doc was fine.  He had even treated some patients with TM in the past. After speaking with him, I was told I’d be seeing a Nurse Practitioner. (NP) Fine with me. I signed a similar contract and took the drug test.  I agreed to drop my dose 10%.

At the second appointment, the NP began by yelling at me for missing an appointment and for lying about my medication history. I had not missed an appointment. I had not lied about my meds. I requested to see the doc. The NP didn’t want me to, but I insisted. The doc checked the files and saw I was right. He told the NP who never apologized. From then on I felt uncomfortable with him although I continued going to the appointments and lessening my meds.

I managed to decrease my meds about 40% less, but then I got sick. Some kind of flu. As had happened before, when I got sick my pain level went up. At the appointment after the flu, I requested not to decrease my meds again till the next appointment. I explained that getting sick can up your pain. The NP told me I was wrong about getting sick increasing pain and that I was acting like an addict. He gave me a prescription for 10% less and I left, but stopped seeing that practice.

I didn’t want to see any more pain docs. I was being treated like an addict and  not a person with a disease who was trying to see if I could feel okay with less medicine. I wonder how those docs treat people who had an addiction?

I spoke with the people in my support group. Many had the same types of experiences with pain doctors. I had a professional relationship with a VA doc who helped soldiers get off pain meds. I explained my problem to him. He couldn’t treat me as I am not eligible for the VA, but he helped me get down to the smallest dose of morphine sulfate on the market. We never met, he just explained what I needed to do and it worked.

I was terrified to go off the final dose of morphine alone. I’d read about addicts detoxing and having sweats, fevers, pain and being miserable. I checked the internet which affirmed those experiences. Once again a piece of luck. My primary care doctor had a DEA license to prescribe Suboxone, a drug to help addicts get off opiates. Suboxone also provides minor pain relief. He was the only doctor I talked to who believed I could do it. I chose a day to start when I had a couple of days that I didn’t have to leave the house. I bought some treats (special teas and cookies), and lots of movies. The process is to go off morphine for 24 hours and then you can take the Suboxone.  I don’t know if this is a common experience, but the 24 hours passed relatively easily.  I had some anxiety, but nothing near what I expected. Since then I have reduced my suboxone dose to a very small one.

For pain I currently take Suboxone, Cymbalta (which is an anti-depression used off-label for pain) and Lyrica.  I am doing very well, but would like to get off the suboxone because although it is not a narcotic or opiate it is still regulated to some degree. I have to get it from a doc who has a special DEA license and fight with my insurance company to pay for it.


No one, not even doctors, can predict the future. I have been told over the years by various doctors and medical personnel that I would not get any better. People in my support group have been told the same thing. Dr. Valdivia always told me I would get better and I did. Don’t give up. Doctors and researchers are in the infancy stage of learning about TM and other similar diseases. As they learn, we will get more treatment strategies. Find another doctor if you aren’t happy with the one you have or don’t feel she is trying to help. With your doctors’ help, try other medicines or other combinations or other doses. Try alternative therapies. Exercise. Write about your problems on the TM web site. Write me. Don’t give up. Surround yourself with friends and family with positive attitudes. Laugh.

This is the final blog in a series by Barbara Sattler, a member of SRNA Board of Directors.  Barbara is a retired judge and a published author.  The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.

Chronic Pain from the Perspective of a TM Sufferer: More Lessons

Lesson Two: Take Pain Medicine as Prescribed

After two years of struggling with various pain meds and being in pain more often than not, my doc suggested morphine sulfate in a timed-release dose. Many docs will tell you that opiates won’t work with nerve pain. For me it was the best option. I wasn’t pain free, but I was able to lead my life more like in the past. Opiates do have side effects, which include constipation, feeling less alert, nodding off, being less articulate. When I asked about addiction my doc said as long as I used the prescribed dose and no more I wouldn’t get addicted. I prided myself on following his directions. No matter how crappy I felt I never took an extra pill. I never felt high after taking pain pills. Another problem with long-term use of opiates is some doctors believe at some point the opiates themselves cause pain.

Besides side-effects there are other problems with using opiates.

  1. The Drug Enforcement Administration (DEA) closely supervises doctors who prescribe opiates or other narcotics. (Opiates are a type of narcotic.) DEA can pull doctors’ licenses or arrest doctors who over or misprescribe opiates. Therefore, most doctors are very careful. Although doctors can legally prescribe a 90-day supply, they will never give you more than a 30-day supply.
  1. You can’t fill an opiate prescription across state lines. If you travel for business or pleasure and you have to get a refill it has to be in your home state. Some pharmacies won’t fill your RX unless you have been a patient. (I don’t understand this last sentence)
  1. Make sure your prescription is filled out correctly before you leave the doctor’s office. At least 3 times the doc or whoever on his staff actually wrote the RX made an error. (forgot the DEA #, or wrong dose). If this happens on a weekend you can’t get the pills till the next week or until the pharmacy can contact your doctor.
  1. Pharmacies require that you present picture ID whenever you purchase narcotics. It is hard to keep your use of narcotics private when you walk up to the window and show your ID.
  1. If you lose your pills by burglary, negligence or whatever, it’s very difficult to get another prescription. (Narcotic drugs are targeted by addicts and thieves who can sell them.) Treat your pills like valuables. Don’t keep all your pills in one place. Keep them in a safe, private place.
  1. You are treated like a drug addict by even medical personnel.I didn’t rely on pills only. I tried a variety of alternative medicines. Some worked and some didn’t. A friend suggested acupuncture. I went to three sessions. Although the acupuncturist was kind and wanted to help me, every time a needle was put in my tender skin, it hurt. I know others who have tried acupuncture and gotten relief. A physical therapist recommended a tens unit. It is a small box that supplies electrical current to the area of your body that hurts. I found it uncomfortable and difficult to use and it did not decrease my pain. I haven’t met anyone who felt it helped. I did not try herbs, supplements or Chinese medicine. I was and am afraid of these remedies although again I do know people who feel they have been helped by them.

At a very low moment in my TM journey I heard of a hypnotist who used to work for the police department and had helped some friends with weight control or to stop smoking. I was skeptical. I didn’t believe that I could get hypnotized or that if I was it would help. I was wrong on both counts. After doing some research I’ve found that hypnotism is legitimate and has been used as an alternative to medicine when people have surgery or babies. I only needed 3 or 4 appointments to learn the technique. After showing me that I could be hypnotized, the hypnotist made me a tape that I could use to hypnotize myself. I did it twice a day, when I first woke up and after work, for about a year and it really helped. (I still took my meds.) I stopped because I was doing well with just medication.

A world of advice. There are unscrupulous practitioners in both western and alternative medicine. The hypnotist I went to was recommended by people I know which I think is the best way to find any professional. I also checked him out to the degree I could. His 25 plus years with the police department also made me trust him. I chose him over people with fancy ads. Fancy ads don’t mean a person knows what they are doing in any profession. With the internet you can get lots more information about professionals although one unhappy client can hurt a reputation undeservedly. There are professional associations you can check. SRNA keeps lists of doctors that our members recommend.  I urge you to add to this list if you can.

Lesson Three: Distraction Helps

It does no good whatsoever to sit around the house feeling sorry for yourself. It’s true that what happened to you isn’t fair. Why were you the one in several million to get this horrible disease?  You didn’t deserve it. Life isn’t fair. Going back to work was a lifesaver for me. Every morning I was in pain getting ready to go, but once I got there and got busy the pain receded. Not all of you will be able to go back to work. But you can do something. Maybe you always wanted to paint or write or learn French.

Join a support group if there is one in your area, or if there isn’t, start one. Meeting with others with your symptoms and problems is a good way to learn about good and bad doctors, strategies for dealing with pain or bowel and bladder issues or unsympathetic friends or family. I talk about my disease to friends, but not often. They don’t understand what I’m going through and certainly don’t want to hear about it every day.

If you can’t go out use the internet to start an on-line group or just chat. Watch funny videos or get addicted to TV shows.

I know it isn’t easy to get out, but it will be worth it. One day when I had recently cut down my meds I was in a lot of pain. I started to cry and laid down on the bathroom floor. I began to sob.  I called my husband and told him to come home. While I was on the phone with my husband, I got a text from a friend reminding me we had made a lunch date that day.

Somehow I got dressed and met the friend.  It was obvious I had been upset so I told her what was going on. We talked about it a bit and then continued discussing other things. By the time I got home, I was able to handle the day.

If you are spending a lot of your time crying, unhappy, being alone, and asking “Why me?” consider seeing a counselor or psychiatrist. Most insurance policies will pay for several sessions. Anyone in our situation could legitimately be depressed. Depression can be treated. There are numerous anti-depressant drugs and talk therapies that help. Again, word of mouth is a good way to find a competent therapist. Your primary doc can also refer you.

This is the second blog in a series by Barbara Sattler, a member of SRNA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.

Notes from the Georgia Support Group Meeting

Kim Harrison, SRNA Support Group Leader

We had a successful NMOSD-TM-ADEM-MS meeting on February 13, 2016!!  Our group has grown. It is such a good feeling when we get together with our fellow myelitis brothers and sisters. February 13th was an extra special day for us to meet. Senator Donzella James signed Resolution 809 on February 15, 2002, recognizing this date as Transverse Myelitis Awareness Day.

We spent the first half of the meeting catching up with each other. Two new members discovered that they are from the same Georgia town and know a lot of the same people and had not met before! The second half of the meeting we were joined by Anneke Bender, physical therapist from Shepherd Center. She discussed with our group the difference between PT and OT. Anneke demonstrated for us how the smallest movements from a seated position can make a difference in our posture, discussed core strengthening, and even had us doing yoga. She helped us to understand the importance of exercise in our lives and how to manage the fatigue associated with our neuroimmune disorders.

February 29th is rare disease day and we will be at the Georgia State Capitol handing out SRNA flyers. For those interested in joining us, please email SRNA at [email protected]a.org.

We are looking forward to our March meeting and another great turn out.

Thank you to all who joined us for our February meeting.

Notes from the Georgia Support Group Meeting

Kim Harrison, SRNA Support Group Leader

We had a successful NMOSD-TM-ADEM-MS meeting on February 13, 2016!!  Our group has grown. It is such a good feeling when we get together with our fellow myelitis brothers and sisters. February 13th was an extra special day for us to meet. Senator Donzella James signed Resolution 809 on February 15, 2002, recognizing this date as Transverse Myelitis Awareness Day.

We spent the first half of the meeting catching up with each other. Two new members discovered that they are from the same Georgia town and know a lot of the same people and had not met before! The second half of the meeting we were joined by Anneke Bender, physical therapist from Shepherd Center. She discussed with our group the difference between PT and OT. Anneke demonstrated for us how the smallest movements from a seated position can make a difference in our posture, discussed core strengthening, and even had us doing yoga. She helped us to understand the importance of exercise in our lives and how to manage the fatigue associated with our neuroimmune disorders.

February 29th is rare disease day and we will be at the Georgia State Capitol handing out SRNA flyers. For those interested in joining us, please email SRNA at [email protected].

We are looking forward to our March meeting and another great turn out.

Thank you to all who joined us for our February meeting

Chronic Pain from the Perspective of a TM Sufferer: Getting Diagnosed & Lesson One

Barbara Sattler

I was diagnosed with TM in Sept. 2001 at age 53. Both of my legs had some degree of paralysis but that receded after a couple months. At present I still suffer with pain and bowel issues. I’m going to try to explain what I’ve learned about dealing with chronic pain for 15 years.

I am a great supporter and believer in the Transverse Myelitis Association (SRNA) and its mission. I encourage everyone to become a member. You will find a community to help you with the wide variety of issues you face when you become ill with a rare neurological disease. Some of those issues I discuss. Whatever your issue you will find help. I joined shortly after I got TM. I’d never even heard of transverse myelitis. In 2007 Julie Barry and I started a support group in Tucson which still meets today. In 2012, I became a board member of SRNA.

I am not a doctor and have no medical training. I am currently retired. Prior to retirement I was a criminal defense lawyer and then a judge. Since retirement I’ve begun to write novels and am working on my third. In my second novel, Anne Levy’s Last Case, the main character has TM. All the proceeds from my book I donate to SRNA.

Please understand that what worked for me may not work for you and what didn’t work for me may work for you. You should not try anything I suggest or change your medicine or exercise routine without first checking with your doctor.


I spent a month going from doctor to doctor trying to find out what was causing a myriad of symptoms: legs partially paralyzed, inability to urinate, constipation, feeling like a boa constrictor was squeezing my chest, pain when I bent down.

Unlike some of you, my disease started slowly. In May, I had a strange pain under my breast. I ignored it and it went away. Later I would find out I had a spinal cord lesion at that level. In June I had weird, copious diarrhea. It too went away. In August I had a rash on my abdomen that I thought might be shingles. The end of August, I woke up with the flu which continued for 10 days. During that time, I had numerous diagnostic tests and a visit to the ER, but no one could tell me what was wrong with me. On the day the fever broke, I woke up unable to walk normally. My left leg didn’t work correctly. I had to drag it. My right leg became heavy and numb. At times I felt weird sensations in my legs like pins and needles or electric current. Although I went back to work, I knew something was horribly wrong. I made several visits to my doc, urgent care and various specialists recommended by friends trying to help me find out what was wrong. The specialists either diagnosed me with a condition in their specialty or said they just didn’t know.

On the second or third visit to my primary care doctor, he decided I needed a brain MRI and a visit to a neurologist. I was thrilled when the neurologist said he knew what was wrong and diagnosed me with TM. I was thrilled because I assumed now that the doctor knew the cause it could be fixed. I was wrong. That was in Sept. 2001. Today 15 years later I still have chronic pain, although much less severe.


I began my pain journey with a neurologist. Unlike some people’s experience with doctors, my neurologist, Dr. Valdivia was the best. I am still under his care. Although it was very difficult to find the right meds or strategies, he never gave up, never doubted what I told him, and called me back whenever I left a message. Often these messages were tearful as were our conversations, but he hung in there with me. He always told me I’d get better.

I’d like to tell my story chronologically, but I can’t. I’m not sure when certain things happened. Some of the early months are somewhat a blur. After being diagnosed I had intravenous steroids for 4 days on an out-patient basis. I wanted to go back to work immediately, but the doc said I should stay home for a week and heal. Little did I know I’d be home for almost 4 months. Prior to TM, I was an active 53-year-old. I took aerobic exercise classes a couple times a week. I swam and hiked.

After I completed the intravenous steroids I started physical therapy. I could barely walk even half a block and still had weird sensations in my legs. I did therapy 2 or 3 times a week for about 6 weeks until my insurance ran out.


I started walking again. At first I couldn’t go more than half a block very slowly, but I kept at it. Slow, short walks got longer. Don’t give up. I used the pool as much as possible. Water therapy is easiest for many people and often people who can’t walk can swim. I also find the cold water helped my pain as did using ice packs. (Hot water was the opposite. I found spas, saunas or even hot baths worsened my pain. Some medical professionals have verified that heat is bad for nerve pain.) I progressed slowly but within a year or so of diagnosis I could do anything I could do before. I attribute some of my recovery to exercising. Today at age 67 I still exercise almost daily.

Physical therapy may be an option that your insurance will pay for, at least in the short term. I also recommend a personal trainer. If you feel comfortable in the gym and know what exercises to do or class to take that’s great. Many people are fearful about exercising after being ill. This is a good time to hire a trainer after checking with your doc that exercise is okay. You may feel that trainers are expensive, but like all professionals they have skills that are worth paying for. Some people use trainers for long periods of time because, after they learn what they need to know, they also need motivation. Others train for a period of months, learn what they need to do and do it. Exercise has lots of benefits for everyone: losing weight, lowering blood pressure or cholesterol, increasing life expectancy, decreasing your chance of certain diseases, increasing balance and even brain power. For people with TM, exercise can do all those things plus decrease your pain and perhaps help your recovery. I hate to sound like a TV commercial, but those things are priceless. One of the best ways to pick a trainer is word of mouth. Otherwise check out a couple places before you decide.

One of the strange benefits I got from TM was standing instead of sitting. My pain was located between my chest and hips, more specifically from where my bra would end to shortly above my belly button. Sitting was very uncomfortable. I chose to either stand or lay down. Once I was well enough to go back to work, I spent much time standing at work and even at home when I ate, read, or watched TV. Current medical literature endorses standing for fitness, weight control and better health. Standing desks are good for you. One for TM.


I can’t remember what meds I was started on with the exception of Neurontin. For a couple years, my doc and I tried different medications in different combinations with different dosages. Some of those meds were tramadol, amitriptyline, amitiza and percocet. Nothing worked well enough to allow me to feel good enough to work. I spent many hours crying.

One of the hardest things I dealt with was my attitude toward pain meds. I didn’t want to take them. Prior to TM, I believed that except for an acute injury or surgery only wimps took pain meds. I considered myself a tough person who should be able to get along without pills. I was fearful of addiction. Instead of following the directions on the pill bottle I held out as long as possible before I took a pill. By the time I took it I was in agony. What I was doing was completely wrong. Pills should be taken regularly so your pain can be under control. If you wait the pain gets worse and it takes more time for the pain meds to help. You spend more time hurting.

This is the first blog in a series by Barbara Sattler, a member of SRNA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.

James T. Lubin Fellow, Dr. Allen DeSena in Cincinnati, OH

Did you know that the very first James T. Lubin Fellowship recipient, Dr. Allen DeSena, has established a neurology practice at Cincinnati Children’s and is accepting new patients, both children and adults?

Dr. DeSena trained under Dr. Benjamin Greenberg at the University of Texas Southwestern in Dallas from 2012-2014, at the TM and NMO center, and has expanded the reach of expertise in the rare neuroimmune disorders to the Great Lakes and Midwest regions of the U.S.  He is furthering the goal of the JTL Fellowship in training others, and reaching and caring for those with a rare neuroimmune disorder. For those in OH, MI, IN, PA, and KY, he’s the specialist in your backyard!

If you or your child has been living with one of the rare neuroimmune disorders, and need to be followed by a neurologist, or perhaps you are seeking another opinion from a neurologist experienced in these disorders, or you need to re-establish with a neurologist years after your diagnosis, please call Dr. DeSena.

It is important to maintain a relationship with a neurologist after an initial diagnosis or acute treatments have been administered, and even after significant recovery has been made.  Should new or worsening symptoms arise, or anything of question a year or more out from diagnosis, many practices may require that you be re-established as a new patient.  You may not need them often, but a neurologist, and particularly one trained in the rare neuroimmune disorders, should be a significant member of your healthcare team. You want them to be familiar with you and your medical history.


For pediatric appointments, call Cincinnati Children’s Hospital Medical Center at (513) 636-4222.

For adult appointments, please call the Adult Neurology Clinic of UC Health Physicians at (513) 475-8730.

Building Confidence for Transition of Care

Young people desire autonomy, but may not have the foresight or the aptitude to know how to reach their goals. The best way to start is to ask questions. I have learned there is rarely a consensus among the patient, parent/caregiver, and healthcare provider when discussing a teenager’s ability to do a task independently, such as remembering to take medications. Awareness of ability, or lack thereof, is crucial in order to create a plan towards independence.

There are three main components to transition of care: knowledge of health needs, being prepared, and taking charge. Listed below are skills needed to independently care for one’s own medical condition.

  • Explaining one’s own diagnosis
  • Understanding medications including indication, dose, potential side effects and surveillance
  • Communicating with the healthcare team
  • Refilling medications
  • Making appointments
  • Knowing when to call providers or seek emergent care
  • Understanding patient rights
  • Understanding/managing insurance

When we think of all the knowledge and skills necessary for self-advocacy and healthy behaviors, our first thought probably is to hide under the covers for a few days. Do not panic! Most caregivers acquired the skills and knowledge to navigate the healthcare system over time, and many times through trial and error. In the safety of the home, it is important to teach our teenagers and young adults how to be experts in their disease, communicate with others independently, and build foundational skills to care for themselves. Building confidence by mastering skills at a young age is expected to increase independence and decrease anxiety. By making smaller attainable goals and accomplishing them, the teenager will feel a sense of accomplishment over time, which will enable the teenager to feel empowered. It is important to remember that there will always be competing priorities; so working on these goals over time will help realize these skills.

Action Steps:

  • Talk about these topics with your teenager
  • Encourage your teenager to pick 1-2 items that are the biggest priority to them
  • Ask your teenager to make a plan to reach their goal
  • Choose a time frame to reassess the goal and modify the plan as necessary

This is the second blog in the series on Transition of Care. Audrey Ayres, RN, BSN, MSCN is a clinical nurse at University of Texas Southwestern Department of Neuro-immunology. She was recently award the 2014 Excellence in Nursing Award by the Dallas magazine. Audrey provides care for adult and pediatric patients with Multiple Sclerosis, NMO, TM, AFM, ADEM and Limbic Encephalitis.  She is also the primary nurse for the Pediatric Demyelinating Disease Clinic for Children’s Medical Center in Dallas, TX.

Central Texas Support Group

Hi everyone! My name is Gina Rodriguez, and I have volunteered to lead the Central Texas Support Group. I lived in the Dallas/Fort Worth area for about 10 years, and helped Barbara Nichols with the support group there. My husband joined the Army and has been stationed at Fort Hood, near Austin, Texas. Once we found this out, I spoke with Barbara, and we decided to start a group for Central Texas. Although it’s taken far too long to get off the ground, I’m excited to finally get this going!

My story is a familiar story, so I’ll keep it short. In 2008, at the age of 28, I woke up one day unable to urinate. Two days later, I finally went to the ER and had a Foley catheter put in. I saw quite a few urologists, none of whom could figure out what was going on with me. I had the catheter in for a month before I learned to self-catheterize, during which time my legs also grew weaker. It was finally determined that the cause was neurological.

The first neurologist waved me off and told me I would be fine. I saw a few more specialists and was finally put on steroids. The steroids seemed to help. The second neurologist that I saw ran more tests, and couldn’t figure out what was going on with me. He finally did a spinal tap, at which time I was diagnosed with transverse myelitis. My options were to wait and see what happened next, or he would refer me to the Clinical Center for Multiple Sclerosis at UT Southwestern. I opted to be referred to UT Southwestern (UTSW).

The neurologist at UTSW was my 10th specialist. It took two years and multiple tests and specialists to get to the right place. My diagnosis was between Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO). For years, my neurologists at UTSW leaned toward NMO, although I did not yet meet the diagnostic criteria. I was officially diagnosed with NMO about two and a half years ago, although I have been treated with the NMO medications since 2010.

I have had approximately 8 flares since 2008. I have recovered from being blind, paralyzed from the waist down, and many other manifestations of this disorder. I am fortunate to have found the right doctors, and to have recovered well from flares. In 2014, my husband and I welcomed our son, Daniel, into the family. I hope to connect people with rare neuroimmune diseases, and provide a safe place to learn and support one another.

If you live in this area and would like to join our group, please contact me at [email protected]

I Volunteered to Lead SRNA Nebraska Support Group

Hello, everyone. I am the new leader of the Nebraska Transverse Myelitis Association’s Support Group. I want to thank Nikki Goeschel for all of her hard work in getting this group off the ground and providing so much support during this transition. I look forward to meeting many of you soon to discuss the future and mission of our group. I have been asked to write a story about my life with transverse myelitis. Sorry it’s not a shorter story but it has been a challenging couple of years.

My father was always healthy. He boasted that his only hospitalization occurred because his tonsils were removed when he was eight years old. He walked 3 miles every day and was seldom ill with anything even as simple as a cold or flu. At age 76, he was diagnosed with Idiopathic Pulmonary Fibrosis (“IPF”), a fatal disease in which deep lung tissue becomes scarred over time and ultimately robs a patient of the ability to breathe. My father died within 60 days of his diagnosis. I had never heard of IPF, even though it kills as many people every year as breast cancer. Like my father, I had been healthy all my life, with only one hospitalization for an appendectomy at age four. I told my family, tongue in cheek, that I would probably end up just like my dad. I imagined I would remain healthy all my life and then finally get some weird disease that no one had ever heard of. Enter NMO.

On December 24, 2012, in my early fifties, I had a whooping cough booster shot based on a doctor’s recommendation because my husband had been exposed at work. About three weeks later, I started exhibiting symptoms that I blamed on the flu — low-grade fever, mild headaches, and extreme fatigue. I was able to manage the headaches and fever with Tylenol, but the fatigue was relentless. Most nights and weekends, I couldn’t even get off the couch. Three weeks after the initial symptoms started, I developed skin pain that felt like I had a sunburn over my enter body –even though I didn’t have a sunburn. That’s how I described it to my family doctor when I visited her on February 1, 2013. She did some blood work and attributed it to a virus. She told me it would pass in 7-10 days.

However, my symptoms quickly worsened: I began running a high fever and losing my balance. I also began falling. I would climb half way up a flight of stairs and suddenly realize I was no longer able to remain upright and falling was inevitable. Fortunately, I fell forward and not backwards down the stairs, which could have been disastrous for me. My husband also said he noticed that I was not going to the bathroom very often. So I contacted my family doctor again, and she referred me to an infectious disease specialist.

On February 12, 2013, I showed up at the specialist’s office partially paralyzed and incontinent. She examined me for a few minutes and then said, “These two symptoms bother me. Do you mind if I call a neurologist?” The neurologist told her to admit me to the hospital immediately and was waiting for me in my room when I arrived. By the time I arrived at the hospital, I was paralyzed from the chest down. After an exam, the neurologist ordered a series of MRI scans. I had been given a lot of Ativan, but I recall that my neurologist phoned the same evening advising me that I had something called transverse myelitis (“TM”), which sounded to me like something from outer space. He said he planned to start treatment with high doses of corticosteroids the next day. Looking back, I am grateful that I had a neurologist who knew he was looking at TM.

I spent the next three days in the hospital receiving infusions of Solu-Medrol and undergoing a series of tests and more MRI scans. I learned that I had extensive inflammation throughout my spinal cord. I had what is known as Longitudinally Extensive Transverse Myelitis (“LETM”), which is a spinal cord lesion that extends over three or more vertebrae in length. My MRI revealed that I had a lesion that was effectively seven vertebrae in length. I also had some diffuse inflammation in other areas of my spine. The MRI scan of my optic nerves was normal, and my brain MRI revealed lesions that are not typically seen in a person with multiple sclerosis. My neurologist ordered a lumbar puncture to test for Multiple Sclerosis and an NMO-IgG antibody whose presence could mean I have a rare disease called Neuromyelitis Optica (“NMO”). That is the first time I had heard of NMO. I researched TM and NMO at https://wearesrna.org and refused to believe I had any of the diseases listed on SRNA website. Certainly, I couldn’t have that weird disease described as NMO. I’m simply not that unique. Three days later, I left the hospital with the assistance of a cane and finished my last two days of Solu-Medrol infusion as an outpatient.

Since the beginning of my illness, I have displayed mixed clinical symptoms including seronegativity for three NMO-IgG antibody tests (despite LETM and other symptoms of NMO), which has made an official diagnosis of NMO difficult for physicians in Omaha and at Johns Hopkins University. Neurologists at the Mayo Clinic finally confirmed a diagnosis of NMO in September 2014. Since my initial presentation of TM, I’ve had five more relapses of the disease. I have had Longitudinally Extensive Optic Neuritis (“LEON”) in my right eye, a less severe attack of Optic Neuritis in my left eye, and three separate incidences of disease activity in my brain. At the same time, I have been struggling with the damage left to my central nervous system (“CNS”) by TM, such as chronic neuropathic pain.

I have suffered great indignities, along with professional and personal losses at the hands of this disease. As an attorney, I used to travel across the country handling arbitrations and mediations for a broker dealer. I loved my work. Now I am disabled and can no longer work as an attorney, in part, because I have chronic fatigue and I am constantly looking over my shoulder for the next relapse. Additionally, I still struggle with the damage done to my body by the initial attack of TM. I spend most of my time visiting physicians or otherwise tending to my care. I have had to fight with my employer, my health insurance company, my disability company and my own health care providers to get adequate treatment for this disease.

Two and 1/2 years after TM, I have assembled what I think is an excellent group of providers and caregivers with me as the captain of my care. I am stable for the first time in over a year thanks to the efforts of my local neurologist and my NMO specialist at Mayo. One of the greatest assets in my continued recovery and search for my new “normal” has been my personal trainer who has been instrumental in helping me with muscle strength, endurance, energy, self-confidence, and most importantly, balance and coordination. My hope is to continue to remain stable and improve my health. I would also like to help people with NMO, TM and other rare neuroimmune associated diseases, to navigate through the many challenges of this weird disease. That is why I have volunteered to help lead the Nebraska support group for the Transverse Myelitis Association.

~ Kelly Davis