Facts About Rare Neuro-Immune Disorders: The 5 W’s

The TMA currently advocates for individuals with six rare neuro-immune disorders: acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM). While these conditions are similar in some ways, each disorder has a distinct criteria for diagnosis. In order to help our community understand the connections between the disorders as well as the differences, Dr. Cynthia Wang compiled the following information on the 5 W’s: who, where, what, which, and why.

You can find the Facts about rare neuro-immune disorders: The 5 W’s information sheet in the TMA’s Resource Library here.



Neuro-immune disorders, such as acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM) are conditions in which a person’s immune system mistakenly attacks parts of the central nervous system (CNS) – brain, spinal cord, optic nerve. 

Who gets these illnesses? 

  • ADEM tends to affect young children, typically ages 4-8, without a significant bias for specific gender or ethnic background.
  • AFM tends to affect children as well, and increases in cases have occurred every other year since 2012.
  • We are still learning about who is more likely to get MOG-Ab disease. Some studies have shown that those with MOG Antibody-Associated Disease are on average younger and are likely to be male compared to those with aquaporin-4 (AQP-4) positive NMOSD. Those with MOG-Ab disease may be more likely to have bilateral involvement of the optic nerves.
  • NMOSD associated with AQP-4 antibodies tends to disproportionately affect non-Caucasian women in their 30-40s.
  • TM can affect individuals of all ages, ethnicities, and either gender.
  • ON is more common in women and develops in most patients between the ages of 20 and 45. Additionally, ON typically occurs more frequently in Caucasians than African Americans.

Where in the nervous system do these disorders affect?

  • inflammation in optic nerves = optic neuritis (ON)
  • inflammation of spinal cord, primarily the white matter of the spinal cord = transverse myelitis (TM)
  • inflammation of spinal cord, primarily the grey matter of the spinal cord = acute flaccid myelitis (AFM)
  • inflammation of brain = encephalitis
  • inflammation of brain and spinal cord (and sometimes optic nerve) = encephalomyelitis (acute disseminated encephalomyelitis (ADEM) is a subtype that may or may not include spinal cord involvement)
  • inflammation of brain, optic nerves, and/or spinal cord = neuromyelitis optica spectrum disorder (NMOSD) or MOG antibody-associated disease (MOG-Ab disease)

What does monophasic or relapsing mean?

Some of these disorders are monophasic, meaning a one-time confused reaction of the immune system, without any further episodes of inflammation (TM, AFM, ADEM, ON).

Other disorders are known as relapsing, in which a persistently confused immune system can continue to cause inflammatory episodes (NMOSD and MOG-Ab disease, although ADEM, TM, and ON can be initial presentations of these relapsing diseases) 

For the disorders that can be relapsing, people are given long-term therapies to diminish the chance of future episodes or to lessen their impact should they occur.  

Testing for AQP-4 and MOG antibodies can help predict if someone will have a monophasic or relapsing course.  

If antibody testing is negative, the longer one goes without another attack, the more likely it is that the condition is monophasic.

Which of these conditions tend to be relapsing or recurring?

Multiple sclerosis and neuromyelitis optica spectrum disorder associated with aquaporin-4 (AQP-4) antibodies are the two most well recognized forms of relapsing CNS auto-immune disorders.

60-80% of individuals with optic neuritis and longitudinally extensive transverse myelitis (involvement of greater or equal to the length of 3 vertebrae) have antibodies to aquaporin-4 (AQP-4), a water channel in astrocytes, a type of support cell in the central nervous system.

A proportion of individuals who test negative for AQP-4 and some of those diagnosed with recurrent ON or ADEM are now known to have antibodies against another target, called myelin oligodendrocyte glycoprotein (MOG). MOG is a protein on myelin and oligodendrocytes, the myelin-producing cells of the central nervous system and are thought to have MOG-Ab disease. Individuals who continue to test positive for MOG antibodies 6-12 months after their initial attack are at risk for recurrent disease and should discuss with their provider if chronic immunosuppression is warranted.

Why do people get these disorders?

This is a central question in neuroimmunology and currently we still don’t know for sure. It is hypothesized that these disorders result from a specific set of circumstances, namely 1) a person whose immune system may be primed to overreact or get confused, or a genetic predisposition to auto-immunity and environmental triggers, and 2) a life event, perhaps a bodily stressor, such as an infection, to trigger the attack. We do not yet know the genetics or environmental factors that lead to these conditions.



Author

Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatrics and pediatric neurology residency at Mott Children’s Hospital, University of Michigan Health System in Ann Arbor, Michigan. Dr. Cynthia Wang completed her James T. Lubin Fellowship under the mentorship of Dr. Benjamin Greenberg at The University of Texas Southwestern and Children’s Health. Her research study was a prospective, longitudinal study on acute disseminated encephalomyelitis (ADEM) to identify the clinical characteristics, treatment methods, and follow-up interventions that are associated with better and worse patient-centered outcomes.

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Q&A on Relapsing vs Monophasic Rare Neuro-immune Disorders with Dr. Cynthia Wang

Individuals who are diagnosed with a rare neuro-immune disorder sometimes experience new or worsening symptoms months or years after the initial onset of their inflammatory attack. Understandably, this causes concern that a relapse of their disorder has occurred. To help our community understand the difference between a relapse and worsening symptoms, we asked Dr. Cynthia Wang to answer some questions about relapsing versus monophasic rare neuro-immune disorders and what to do if you think you may be experiencing a relapse.

You can find the Relapsing vs Monophasic Rare Neuro-immune Disorders fact sheet in the TMA’s Resource Library here.



Are diseases such as transverse myelitis (TM), acute flaccid myelitis (AFM), optic neuritis (ON), acute disseminated encephalomyelitis (ADEM), MOG antibody-associated disease (MOG-Ab disease), or neuromyelitis optica spectrum disorder (NMOSD) one-time or relapsing diseases?

It depends. TM, ON, and syndromes resembling ADEM can occur in the setting of relapsing conditions, such as multiple sclerosis, neuromyelitis optica associated with aquaporin-4 antibodies (AQP-4), and some systemic/ rheumatologic diseases. Once an individual has undergone sufficient workup for these conditions and they have been ruled out, the likelihood he or she has idiopathic transverse myelitis or monophasic ADEM increases, which are considered one-time disorders. In the past year, clinicians have also been able to test for a new antibody called MOG (myelin oligodendrocyte glycoprotein). Like AQP-4, MOG antibodies can be assessed with good accuracy through a blood sample. Although the MOG story is still unfolding, many physicians following patients who continue to test positive for MOG antibodies 6-12 months after the initial episode have reported relapsing disease in this population and are thought to have MOG antibody-associated disease.

I had transverse myelitis (TM), optic neuritis (ON), or acute disseminated encephalomyelitis (ADEM) in the past and was told I don’t have multiple sclerosis or neuromyelitis optica spectrum disorder (NMOSD). I am now experiencing new or worsening neurological symptoms? What should I do?

It is very important for you and your provider to determine if the worsening symptoms are related to new inflammation (i.e., a relapse), or from some temporary disturbance in your body’s normal state unmasking symptoms from a prior injury, without new inflammation (pseudo-relapse).

For symptoms that last over 24 hours and do not improve with rest, hydration, being in a comfortable temperature, and/or recovery from an acute illness (e.g., respiratory or urinary tract infection), contact your neurology provider. He or she may order blood or urine tests to make sure you are not experiencing any acute infections or metabolic disturbances. If ruled out, additional tests may include an MRI of suspected area of new inflammation (i.e., brain, spine, and/or optic nerves).

Evidence of new inflammation on MRI and/or symptoms related to a part of the nervous system that was not affected in the past suggests a new acute inflammatory episode. This should be treated with immunotherapy such as corticosteroids to stop ongoing inflammation, and trigger a discussion with your clinician about whether ongoing immunotherapy to prevent another attack is needed.

If I am concerned I have a relapsing disorder, what should I do?  

Discuss this concern with your neurology provider, and ask if you would be an appropriate candidate to test for AQP-4 and MOG antibodies (available through Mayo Medical Laboratories as “CDS1” order).  

My doctors say they can still see TM or an area of damage on my MRI. Does this mean I have a relapsing disorder?

During an inflammatory attack in the spinal cord, as occurs in TM, there may be evidence of inflammation on MRI (areas of contrast enhancement indicating compromise of the blood-brain-barrier) or an increase in inflammatory cells in cerebrospinal fluid. After this inflammation subsides, there may be evidence of where this attack occurred, or an area showing previous damage (T2/ FLAIR abnormalities), but not ongoing inflammation (e.g., continued contrast enhancement). Gliosis, essentially a scar in the brain, can be seen for months or years and does not indicate ongoing inflammation or relapsing disease. An MRI that shows new inflammation suggests a new acute inflammatory episode.

My doctor told me I am AQP-4 positive, now what?

An episode consistent with neuromyelitis optica spectrum disorder and a single positive test for AQP-4 in blood or spinal fluid are typically adequate to establish a diagnosis of NMOSD. These individuals should be placed on immunosuppressive therapy, which we currently advise be continued indefinitely. This is because NMOSD attacks can be severe, cause lasting visual or motor impairment, and are very likely to recur unless treated.

My doctor told me I am MOG positive, now what?

This depends on when MOG antibodies were tested in relation to your demyelinating event. If MOG antibodies were detected at the time of the attack or in the first 6 months following attack, we recommend retesting for MOG antibodies 6-12 months after your event. If you become MOG negative, you are unlikely to have future relapses.

If MOG antibodies are positive again, you are considered to have MOG antibody-associated disease, and may be at risk for future demyelinating episodes. You should speak to your neurologist about whether you should be placed on a therapy to prevent the likelihood of a relapse.

For individuals who undergo MOG testing for the first time 12 months or greater after their demyelinating event, one positive MOG test would be sufficient to diagnosis persistent MOG antibodies and then you should have a discussion with your physician as above about chronic immunotherapy.

I already have any existing diagnosis of multiple sclerosis or neuromyelitis optica spectrum disorder. Should I be tested for MOG?

It depends on your clinical history and if you have tested positive for AQP-4. MOG testing is reasonable in people who’ve been told their presentation is atypical for multiple sclerosis and neuromyelitis optica spectrum disorder and previously have been negative on AQP-4 testing. AQP-4 positive patients with symptoms consistent with NMOSD do not need MOG testing, as being double positive (MOG and AQP-4 positive) is exceedingly rare. In addition, this information ultimately would not change management as recurrent MOG and AQP-4 associated NMOSD are currently managed very similarly.

People with presumptive multiple sclerosis who do not respond as well as expected to MS drugs should have a discussion with their doctor about MOG testing as MOG syndromes can be misdiagnosed as MS. A positive MOG test may change medical management as some MS therapies might be ineffective or perhaps even exacerbate MOG antibody-associated disease.

People with MRI and spinal fluid studies consistent with multiple sclerosis should not be routinely screened for MOG antibodies, but decided on a case- by-case basis after discussion with a neurologist.

Glossary

Central Nervous System: Includes the brain, spinal cord, and optic nerve.

Monophasic rare neuro-immune disorder: A disorder that causes only one episode of inflammation in the central nervous system.

Recurrent or relapsing rare neuro-immune disorder:
A disorder that causes more than one episode of inflammation in the central nervous system.

Relapse: New inflammation in the central nervous system.

Pseudo-relapse: Temporary disturbance in the body’s normal state unmasking or worsening symptoms from a prior injury, without new inflammation in the central nervous system.

Attack: An event of inflammation in the central nervous system.

Onset: The first symptoms of a rare neuro-immune disorder. Typically, the first attack.

Inflammation: Part of the body’s immune system meant to eliminate noxious agents. In rare neuro-immune disorders, the immune system mistakenly attacks the brain, spinal cord, or optic nerve, causing inflammation in these areas.


DisorderAreas of CNS InvolvementSpecific Diagnostic TestsRelapsing or MonophasicOngoing Immuno-suppresion indicated?
ADEMBrain
Spinal Cord
Optic Nerve

None if monophasic

___________________________

MOG Antibody

If MOG negative 6-12 months after onset, typically monophasic

__________________________

If MOG positive 6-12 months after onset, might be recurrent (MOG-Ab disease)


No

_________________________

Yes

AFMSpinal Cord (primarily grey matter)Enterovirus PCR in CSF (though virus is very difficult to isolate), positive enterovirus/rhinovirus on respiratory specimen is supportiveMonophasicNo
Mog-Ab DiseaseBrain
Spinal Cord
Optic Nerve
MOG AntibodyUncertain, persistence of MOG antibodies are associated with relapsing diseaseYes, if relapses occur
MSBrain
Spinal Cord
Optic Nerve
None, though CSF oligoclonal bands are supportiveRelapsingYes
NMOSDBrain
Spinal Cord (typically lesions more than 3 vertebral segments in length)
Optic Nerve
Aquaporin-4 antibodyRelapsingYes
ONOptic NerveNoneDepends if ON is a part of MS, NMOSD, or MOG-Ab diseaseTypically yes if relapsing
TMSpinal Cord (primarily white matter)NoneMonophasic

_________________

In very rare cases can be recurrent

No

__________________

Case-by-case


Author

Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatrics and pediatric neurology residency at Mott Children’s Hospital, University of Michigan Health System in Ann Arbor, Michigan. Dr. Cynthia Wang completed her James T. Lubin Fellowship under the mentorship of Dr. Benjamin Greenberg at The University of Texas Southwestern and Children’s Health. Her research study was a prospective, longitudinal study on acute disseminated encephalomyelitis (ADEM) to identify the clinical characteristics, treatment methods, and follow-up interventions that are associated with better and worse patient-centered outcomes.

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Frequently Asked Questions about AFM

The recent increase in cases of Acute Flaccid Myelitis (AFM) is causing concern across the United States. The TMA has received many questions from the community about AFM, so at the 2018 Regional Rare Neuro-Immune Disorders Symposium in Boston, we asked Dr. Benjamin Greenberg of the University of Texas Southwestern Medical Center to respond to the most commonly asked questions we have received. You can view his responses below. You can also view the rest of the videos from the symposium on our YouTube page here. You can find more resources on AFM in our Resource Library, including our 2018 Podcast on Acute Flaccid Myelitis and Dr. Greenberg’s presentation on AFM at the 2018 Regional RNDS.


What is acute flaccid myelitis?




What causes acute flaccid myelitis?




Is acute flaccid myelitis contagious?



Will someone who already has TM or another neuro-immune disorder be susceptible to AFM?



What are the symptoms of acute flaccid myelitis?



What should a parent do when they suspect symptoms of acute flaccid myelitis?



Where should treatment be sought?



How do you diagnose acute flaccid myelitis?



What are the treatments for acute flaccid myelitis?



Is there a relation between vaccinations and acute flaccid myelitis?



Can acute flaccid myelitis be prevented?



Is there a cure for acute flaccid myelitis?



What is the relationship between EVD68 and acute flaccid myelitis?


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Does my child need an IEP or 504?

By Beth Schwartz

Beth is the mother of a child with NMOSD and has attended the TMA Quality of Life Family Camp. You can find Beth’s blog at http://thesurpriseturn.blogspot.com/.

Your child is out of the hospital, hopefully has a diagnosis and now is ready to go back to school. Now what?

Depending on your child’s needs, you can talk to your child’s school about different levels of support.

My daughter had a seizure, so the first thing the school needed was a seizure action plan. This is a plan the doctor created with directions on what to do if she had another seizure. I needed to provide the school with the seizure action plan (signed by her doctor) and a medical form (also signed by her doctor) for her prescription rescue medication before she could go back to school.

A similar protocol is often used for children diagnosed with diabetes. Schools may require a diabetes action plan that is signed by the doctor and includes information on how to manage the child’s diabetic needs.

If your child is doing well in school and able to do things like he or she did before? That is awesome. Do a little happy dance!

Some children, though, need more. For our daughter, we saw that her school success was being hindered by the visual and memory problems that resulted from her NMO. She didn’t need special instruction or therapies, but she did need some accommodations. We met with the school staff and determined that she was eligible for a 504 plan. 504 plans are based on the individual needs of the child and can allow for things such as extra time and preferential seating.

Some children require specialized instruction or therapies. In these situations, students may need to be evaluated to see if the qualify for an IEP (Individualized Education Plan). This requires an evaluation process in which the school district often does both cognitive and academic testing.

What’s the difference between a 504 and an IEP? They are both individualized plans. A 504 provides accommodations to the general education instruction, where as an IEP is providing specialized instruction. IEPs include specific goals for areas of need. These goals can be related to specific areas such as academics, behavior, speech, occupational therapy and physical therapy. 504 plans do not include goals. Information from the doctor, your child’s teacher and school evaluations can help you determine if your child is eligible for one of these plans.

Not sure what to do? Call your child’s school. They can meet with you to talk about your concerns and determine what the next steps should be for your child’s success.

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Recent Spike in Cases of Acute Flaccid Myelitis

Reports have been circulating across the United States concerning the recent spike in cases of Acute Flaccid Myelitis (AFM), a subtype of Transverse Myelitis. AFM is inflammation of the spinal cord, and it predominantly affects children. From August 2014 through August 2018, the Centers for Disease Control and Prevention (CDC) has received information on a total of 362 cases of AFM across the U.S.1 The exact cause of AFM has not yet been determined, but it usually follows a respiratory infection and is believed to be caused by a common virus. However, most children who are infected by the virus do not contract AFM.

The most common symptom of AFM is weakness in the limbs and can result in partial or full paralysis in some cases. AFM is diagnosed based upon clinical exam, MRI findings, lumbar puncture, and may also include a nerve conduction study (EMG) to determine if there is injury to the lower motor neuron. Testing may also include blood draws, respiratory tract samples, or collection of other bodily fluids to determine if a viral or infectious component is present. A diagnosis of AFM differs from classically described Transverse Myelitis in that abnormalities on an MRI are predominantly found in the gray matter of the spinal cord in cases of AFM.

To date, there have not been any conclusive studies that prove a viable treatment for AFM; however, treatments available for Transverse Myelitis have been used. These treatments include high dose IV steroids, IVIG, and plasma exchange (PLEX). The CDC does not recommend the use of steroids, IVIG, or plasma exchange in AFM because of a lack of controlled data, but individuals with AFM or caregivers of children with AFM should discuss treatment recommendations with their physician. Multiple centers have used these therapies with variable results. Physical therapy is believed to be critical for recovery in AFM.

If you or someone you know has a child experiencing symptoms consistent with AFM, it is important to seek emergency care immediately. The TMA will be hosting a special podcast on AFM next week with Dr. Benjamin Greenberg of UT Southwestern Medical Center. We will announce the podcast once all details are finalized. Information and support for those affected by AFM can be found using the following resources:

Membership Form: https://myelitis.org/join/

Information Sheet on AFM: https://tma.ong/2y9Ie5v

AFM Resources: https://tma.ong/AFM-resources

Management of AFM: https://www.youtube.com/watch?v=mpe-TkQhrD4&feature=youtu.be&list=PLXi60bECkjnXxzgkf2bk3J12iwVU1Q4ML

Q&A and Podcast: https://myelitis.org/acute-flaccid-myelitis-understanding-recent-outbreak/

2017 Collaborative Meeting on AFM: https://myelitis.org/collaborative-meeting-acute-flaccid-myelitis/

Parents of Children with AFM Share Stories: https://myelitis.org/resources/power-sharing-stories/2/

AFM – What Is It?: https://archive.myelitis.org/resources/Newsletter_Articles/2015_04_15_afm.pdf

[1] AFM Investigation. (2018, October 5). Retrieved October 11, 2018, from https://www.cdc.gov/acute-flaccid-myelitis/afm-surveillance.html

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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: https://tma.ong/2PUs2ve. To view the proposed bill in its entirety, please visit https://www.congress.gov/bill/115th-congress/senate-bill/1318/text.

If you would like to learn more about using air travel as a person with a disability, the TMA recently hosted a podcast on this subject. You can listen to the podcast here: https://myelitis.org/resources/air-travel-with-a-disability-your-rights-best-practices-and-suggestions/.

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2017 Ask the Expert Podcast Recap

In 2017, the TMA 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 neuro-immune diagnosis” with Dr. Ben Greenberg and Dr. Sara Qureshi. We then learned about “Vaccinations and rare neuro-immune 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 neuro-immune 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 neuro-immune 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 neuro-immune disorders.

If you were unable to join any of the TMA 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!

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2017 Symposium Videos are Here!

The 2017 Rare Neuro-immune 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 the TMA’s YouTube Page and our Resource Library.

We strive to continue hosting educational events like these in order to fulfill the TMA 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 neuro-immune 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 jbennett@myelitis.org 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 Transverse Myelitis Association today, you are taking an active role in efforts to help advance research, education and awareness of rare neuro-immune disorders.

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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 the TMA. Barbara’s books are available for purchase on Amazon.com, 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.

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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.

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