Proposed Legislation to Improve Air Travel for People with Disabilities

The House of Representatives of the United States Congress passed a bill that renews authorization and funding to the Federal Aviation Administration (FFA) for five years and proposes updates to the Air Carrier Access Act (ACAA). The ACAA was originally enacted in 1986 to protect individuals with disabilities from discrimination in air travel. Although the ACAA has led to progress in this endeavor, individuals with disabilities still experience issues such as damage to their assistive devices, a lack of seating accommodations, inaccessible bathrooms, mishandling of service animals, and lack of training by the airline staff to provide adequate assistance. The proposed amendments to the ACAA aim to rectify some of these issues by ensuring streamlined boarding, deplaning, and connections between flights, accessible accommodations, and accessible communication, including both visual and audible announcements.

The bill also creates a Select Subcommittee for Aviation Consumers with Disabilities, which will advise the Secretary of Transportation on the air travel needs of individuals with disabilities. The bill also orders the U.S. Department of Transportation to conduct a study on the use of in-cabin wheelchair restraint systems and issue a report to Congress within 180 days of completing the study. Finally, the bill requires that the training provided to airport and airline staff be reviewed and updated.

Now that the bill has been passed by the House of Representatives, it has moved to the Senate. To contact your Senators to voice your support of the Bill, please visit this site: To view the proposed bill in its entirety, please visit

If you would like to learn more about using air travel as a person with a disability, SRNA recently hosted a podcast on this subject. You can listen to the podcast here:

2017 Ask the Expert Podcast Recap

In 2017, SRNA hosted 11 podcasts as part of our Ask the Expert Podcast Series. In total, 362 people attended the live broadcast of these podcasts, and the recordings on YouTube have been played more than 2,300 times!

We started the year with a podcast on “Building a multidisciplinary team for complex care after a rare neuroimmune diagnosis” with Dr. Ben Greenberg and Dr. Sara Qureshi. We then learned about “Vaccinations and rare neuroimmune disorders” with Dr. Teri Schreiner and Dr. Augusto Miravalle, and how there is still much research to be done on this topic. In March, Katherine Treadaway and Paula Hardeman joined us for a podcast on “Managing your health after a rare neuroimmune diagnosis” where we learned about having a comprehensive approach to maintaining a healthy lifestyle.

Next, we were joined by registered dieticians Tad Campbell and Christopher Flores for a podcast on “The role of nutrition in managing your health”, and we learned about the importance of a balanced diet, hydration, and weight management. We then hosted a series of podcasts focusing on each of the rare neuroimmune disorders in an open forum: transverse myelitis (including acute flaccid myelitis), neuromyelitis optica spectrum disorder, and acute disseminated encephalomyelitis.

In August, we learned about “Gaining functional recovery through occupational therapy” from occupational therapists Rebecca Martin and Kathleen Zackowski. They explained how occupational therapy is used to teach individuals how to use “strength and endurance, but also cognition and coordination to engage in more meaningful activities” such as bathing and eating. We then learned “How to get the most out of your appointments: Physician and patient perspectives” with Dr. Ben Greenberg and Kristin Smith, an individual diagnosed with TM.

In November, we were joined by licensed social workers Sandra J. King and Katherine Treadaway for a podcast on “How to manage and cope with grief”, where we learned how grief takes many forms and can be caused by experiencing a life-changing disorder. Finally, we ended the year with a podcast on “Rheumatological conditions and ADEM, NMOSD, TM, and ON.” Dr. Julius Birnbaum and Dr. Tracey Cho spoke about how rheumatological conditions often coincide with rare neuroimmune disorders.

If you were unable to join any of SRNA Ask the Expert podcasts in 2017, they were recorded and can be found in our Resource Library here. Additionally, we have transcribed some of our podcasts, which can be found here.

We would love your feedback on how to improve the podcasts! Please click the button below to take a brief survey on your experience, and feel free to tell us what you would like to learn about in future podcasts!

2017 Symposium Videos are Here!

The 2017 Rare Neuroimmune Disorders Symposium was held on October 20th-21st in Columbus, OH at the Hilton Columbus at Easton. We hope that the opportunity to meet the medical professionals, to connect with others in our community and learn more about TM, AFM, ADEM, ON, and NMOSD was a beneficial experience for those who attended. For those who couldn’t join us in person, symposium sessions were recorded and are available on SRNA’s YouTube Page and our Resource Library.

We strive to continue hosting educational events like these in order to fulfill SRNA mission of promoting awareness and empowering patients, families, clinicians and scientists through education programs and publications.

“The word rare doesn’t really apply in this room because for you it’s not rare, it’s real.” Dr. Brenda Banwell started the symposium with an overview about rare neuroimmune disorders.

Then there were disorder workshop sessions on Transverse Myelitis, Neuromyelitis Optica Spectrum Disorder and Optic Neuritis, Acute Disseminated Encephalomyelitis, and Acute Flaccid Myelitis. Speakers also gave talks on neuropathic pain, fatigue, bladder, bowel, and sexual dysfunction, neuropsychological issues, and rehabilitation.

We ended the 2017 RNDS with an afternoon on research updates where scientists and researchers shared exciting and promising information about the diagnosis, management, and treatment of these disorders. Below, you can find the video of Dr. Michael Levy’s talk on the Genetics of Familial Transverse Myelitis and his ongoing research to uncover a genetic link to TM. You can find all of the research talks on the 2017 RNDS page in our resource library.

If you would like to get involved, use your voice to connect with others and foster strong relationships in our community, or start a support group near you, please reach out to our Community Partnerships Manager, Jeremy Bennett at [email protected] to learn more.

We look forward to seeing more of our community next year at a regional symposium we are planning. Please check our website for more details in 2018.

Our work is made possible through the generous donations of individuals who believe in our mission. By choosing to donate to The Siegel Rare Neuroimmune Association today, you are taking an active role in efforts to help advance research, education and awareness of rare neuroimmune disorders.

National Medication Disposal Day

By Barbara Sattler

Ms. Barbara Sattler is on the Board of the Transverse Myelitis Association. While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written three novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on, and she has a blog.

October 28th is National Medication Disposal day. You may wonder why you should care. At least on National Pancake day you get a free pancake.

The US is in the midst of an opioid crisis. In 2016 more than 64,000 Americans died from overdoses of opioids including heroin, morphine, oxycodone, and related drugs. Every year the count rises. With the introduction of Fentanyl and other drugs newly available (some of which are 100 times more powerful than morphine), the number will only climb. A ten-year-old boy recently died after touching a towel which had traces of Fentanyl. Some of these drugs are so powerful only a few grams or less can lead to overdose. Police officers (and police drug dogs) have died of accidental overdose when they failed to take precautions such as wearing gloves and a mask when having contact with these drugs. Fortunately, antidotes such as naloxone (narcan) can be administered to people and dogs to prevent death if administered in time and correctly.

Opioid addiction is not other people’s problem. Addiction cuts across sex, age, race, and class lines. A housewife with a college degree or an older adult who has had a productive work history is as likely as anyone else to become an opioid addict.

Many children first experiment with drugs between the ages of 10 and 12. They get them, not from older school mates, gangs or ‘pushers,’ but from their parents’ medicine cabinet. In a popular teen fad, called pharming, kids raid their parents’ medicine cabinet, put the drugs in a bowl and randomly divide them up and ingest them. If they like the high, they continue to try and get prescription drugs. When they are unable to afford them, they look for the lower-priced alternative, heroin. Almost everyone who uses heroin is addicted from the first use.

Even if it’s not your kid, it may be your niece, nephew, or one of their friends or your friends (adults also raid medicine cabinets).

You can save lives by disposing of pills you no longer need and safely storing the ones you still use. Make sure they don’t fall into the wrong hands, including burglars who look for drugs and know where to find them. Handling drugs safely may also prevent an accidental overdose by a curious kid or hungry dog.

What can you do to save lives?

Keep your narcotic medication in a safe, not the medicine cabinet or next to your bed. If you don’t have one, you can purchase a safe for medication fairly cheaply. Check stores like Target, pharmacies or online.

If you don’t want the rest of your medication, find a safe way to dispose of it.

Unfortunately, it’s not that easy to safely rid yourself of drugs. If you throw them away in the original container, they may be stolen or fall into the hands of animals or children.

Throwing them down the toilet is an option, but some may contaminate the water system. You can look on the internet to find out if the drug can be safely flushed. The Drug Enforcement Agency’s (DEA) position on this issue is it is always better to flush drugs than keep them around.

If you want to throw drugs into the trash follow these steps. Take them out of the container. Put them in a plastic bag with water which will help dilute them and add some substance which will keep kids and dogs away, such as coffee grounds or kitty litter. I use dog poop.

The DEA has set up sites in each state where you can dispose of unwanted drugs. You can check the DEA website for that information. Usually disposal sites are in police or sheriff substations.

Transverse Myelitis 101

Dr. Elena Grebenciucova is a former James T. Lubin Fellow. She is currently a neurologist and a faculty member at Northwestern University in Chicago. We asked Dr. Grebenciucova to give us a brief overview on transverse myelitis. For more information on transverse myelitis, click here.

1. What is TM?

Transverse myelitis is a general term used to describe inflammation in the spinal cord. The word transverse means that the inflammation spreads across left and right half of the spinal cord at any particular level. Not all cases of myelitis are transverse; some may involve only a part of the spinal cord. Transverse myelitis (inflammation of the spinal cord) can occur as a result of a variety of inflammatory, infectious and post-infectious immune-mediated disorders and, in some cases, where no inciting factor or an underlying condition is found, TM may be considered idiopathic. Sometimes TM is not idiopathic and can be the initial presentation of conditions that can affect the spinal cord, for example, TM can occur with multiple sclerosis, neuromyelitis optica and ADEM.

2. What are the initial signs and symptoms of TM?

Initial signs and symptoms of transverse myelitis depend on the location of the inflammation.  For example, if the inflammatory lesion is located in the cervical spinal cord, the symptoms frequently involve both arms and legs. If the lesion is located in the thoracic spinal cord, the arms are spared, but the legs are affected. Some cases of transverse myelitis are very extensive and affect parts of cervical and thoracic spinal cord.  As a rule, people are affected from the spinal cord level where the attack occurred and below.  Transverse myelitis can present with a combination of symptoms such as loss of sensation, tingling in one’s hands/arms or legs, pain in the back, loss of strength in one’s arms and/or legs as well as problems controlling one’s bladder and bowels. In fact, many people with TM may experience bowel and bladder symptoms at onset because these functions are partially controlled at the bottom of the spinal cord.

3. How does someone get TM?

There are no known risk factors or behaviors that predispose someone specifically to transverse myelitis. Having a family history of an autoimmune disorder that affects the spinal cord may predispose that individual to the same autoimmune disorder, but it is not a guarantee that they will develop transverse myelitis. For example, patients with multiple sclerosis and systemic lupus erythamatosus can develop inflammatory lesions in the spinal cord, resulting in transverse myelitis; however, not all patients with systemic lupus erythematosus or multiple sclerosis develop transverse myelitis. There is no known genetic predisposition to transverse myelitis at this time.

4. How is TM diagnosed?

Transverse myelitis diagnosis is based on patient’s symptoms, findings on the neurological exam, magnetic resonance imaging and results of the cerebrospinal fluid (obtained via a lumbar puncture). The doctors will take special care to exclude mimics of transverse myelitis such as tumors and blood vessel abnormalities or blood clots that can result in ischemia (lack of oxygen and tissue death) of the spinal cord.

5. What are the long-term effects of the disorder?

Long-term effects of TM are variable and depend on the initial severity of TM, extent of the damage to the spinal cord, timeliness of the diagnosis, timeliness of the treatment initiation, ability to participate in physical therapy, patient’s age, and most importantly if TM is the initial presentation of an underlying disorder. Other effects include residual motor weakness, sensory changes, and bladder and bowel problems, and in a minority of patients with lesions at the thoracic level T6 or above, dysautonomia (loss of control of blood pressure). High cervical cord lesions extending into the brain stem may result in respiratory failure and ventilator dependence. In the long-term, some patients with TM may develop increased muscle tone leading to stiffness, painful muscle spasms and, in some cases, contractures. Pain can be a significant long-term effect of transverse myelitis.

6. Can anyone get TM, or only those with a genetic predisposition?

There is no specific genetic predisposition to an inflammatory transverse myelitis. Although the risks are low, anyone can develop transverse myelitis secondary to an aberrant immune response or infection.

7. Are there any ways to prevent yourself from getting TM?

Although exercising, eating a nutritious balanced diet and making sure your vitamin D levels are within normal range may significantly improve one’s overall health, currently there are no specific behaviors, diets, exercises or medications that can prevent transverse myelitis.

8. How many people does TM affect per year?

In the US, about 1400 new cases of transverse myelitis are diagnosed every year. Annual incidence of TM is estimated at 1.3 to 4.6 per million.

9. What kind of health care professionals see patients with TM?

Neurologists are the primary diagnosticians of transverse myelitis and are skilled in following and treating patients with TM. However, care of patients with TM frequently involves a multidisciplinary team consisting of a primary care physician, rheumatologist, urologist, physiatrist (rehabilitation doctors), physical and occupational therapists, social worker, nurses and nurse practitioners.

Thank you Dr. Grebenciucova! For more resources on TM, visit the resource library.

Understanding Acute Flaccid Myelitis

Over the last few months, there has been an increase in new diagnoses of pediatric Acute Flaccid Myelitis (AFM). AFM is a condition causing damage to the spinal cord and generally presents with unique clinical and MRI features that are not typical of transverse myelitis. AFM abnormalities noted on MRI are predominantly found in the gray matter of the spinal cord. A link to the enterovirus (EV-D68) has been suspected in many of these cases. Whether the damage to the spinal cord is from viral infection, inflammation, or both, it is not yet proven. The predominant presentation is weakness that may affect the limbs, face, or eyes. AFM may result in total paralysis, partial paralysis, or weakness of just one limb. Some children have been diagnosed with an aggressive form of AFM.

Join us for a podcast on Acute Flaccid Myelitis with Dr. Benjamin Greenberg on November 16th, 2016 at 2:30 pm Eastern Time to learn more and ask your questions. 

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].

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

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