NMO Frequently Asked Questions (FAQ)
General NMO Frequently Asked Questions (FAQ)
General Clinical Trial Frequently Asked Questions (FAQ)
NMO stands for neuromyelitis optica, originally known as Devic’s Disease. NMO is currently an incurable but treatable autoimmune disorder. The body’s immune system attacks its own healthy cells, most commonly in the optic nerves and spinal cord. It can cause temporary or permanent blindness and/or paralysis, and may have periods of remission and relapse.
At present, the specific cause(s) of NMO are unknown. However, most experts believe that NMO results from a dysfunction in immune tolerance, which is the immune system’s ability to distinguish one’s own cells or proteins from potentially foreign materials.
Based on recent epidemiologic reports, there are an estimated 4,000 cases in the United States and a half million worldwide. As with many autoimmune conditions, females are affected by the disease more commonly than males, at an approximate ratio of 6:1. NMO can affect both children and adults.
The time interval between relapses or attacks can range from days, weeks, months or even years apart. Some cases have been known to have attacks 15 years apart. In some patients there is only one episode (no relapses), but such cases are relatively uncommon.
NMO symptoms can vary from person to person and may resemble MS symptoms in many ways. NMO is most commonly characterized by inflammation of the spinal cord and/or optic nerves, causing any one or more of the following symptoms:
Sometimes these symptoms are temporary, and resolve on their own. In any case, it is important to discuss these symptoms with your doctor to help consider NMO in your diagnosis.
There are currently several methods that can be utilized alone or together to diagnose NMO:
No. Most NMO IgG tests list a 5-10% chance of a false-positive result, or a 20-30% chance of false negative result. The most commonly used laboratory test for NMO antibody was created in 2000 at the Mayo Clinic.
Your primary care physician or neurologist can order the NMO IgG antibody test.
The GJCF “Connect the Docs” webpage provides contact information for neurologists and other clinicians in the U.S. and throughout the world who specialize in diagnosing and treating NMO. Click here to view now.
No. Many clinicians and neurologists have never seen an NMO patient and are not aware of this rare disease. To view physicians that treat NMO, pleasit visit Mapping NMO for more information.
Yes. NMO is sometimes misdiagnosed as MS. The treatments for these distinct conditions can be very different, and recent reports suggest that some agents used to treat MS may be ineffective in NMO or actually make NMO symptoms worse.
Until recently, NMO was thought to be a type of Multiple Sclerosis. However, recent discoveries indicate that NMO and MS are distinct diseases. With so many symptoms in common, NMO can sometimes be confused with MS or other diseases. But these diseases are treated in different ways and early detection and treatment help ensure best outcomes. For these reasons, it is important to seek clinical care as soon as possible if symptoms occur.
At present, treatment of NMO is targeted at two facets of the disease:
Acute NMO relapses or attacks are often treated with:
Plasmapheresis is often used if steroid treatment is ineffective. Some clinicians use plasmapheresis on a limited scale in cases where patients show poor tolerance for other agents used to prevent relapses.
The most common immunosuppressive agents used by NMO specialists to prevent NMO attacks include:
Relapse prevention medications can be very helpful but may not be 100% effective.
As with many aspects of medicine, neurologists including NMO specialists may have certain preferences for one treatment regimen over another. Selection of a treatment regimen depends on many individual factors such as symptoms, disease severity, whether the treatment is well-tolerated, cost, and other factors.
As with the treatment of any disease, certain NMO treatments can have side effects, including serious adverse events such as infection. However, recent reports suggest that treatment efficacy is improving, and the benefits far outweigh the negative side effects in preventing or resolving severe attacks. It is always best to consult with your physician and/or an NMO specialist to determine which treatment regimen may be best for you.
18. If taking immunosuppressive therapy, is it OK to take over-the-counter herbal remedies and/or vitamin supplements? [+]
18. If taking immunosuppressive therapy, is it OK to take over-the-counter herbal remedies and/or vitamin supplements? [-]
It is always best to consult with your physician and/or an NMO specialist regarding over-the-counter herbal remedies and/or vitamin supplements in relation to your NMO treatment regimen.
All immunosuppressive therapies reduce the ability of your immune system to fight against infection and cancer. In addition, wound healing may be slower, and dental health compromised. Preventative exams such as mammograms, pap smears, dermatology full-body exams, and dental hygiene should be done regularly. It is also important to pay attention to public health hygiene by considering the basic rules of protecting yourself against transmissible diseases:
The immune system is one of the most powerful yet mysterious of all the systems in the human body. Intensive research is being conducted to understand the specific causes of NMO, identify new and more effective treatments that prevent relapses, and ultimately find ways to reset the immune system with the intention to solve NMO. It may even be possible to use the immune system itself to do so.
It is not known if the body can heal damage to the spinal cord, optic nerves or brain caused by NMO. It is possible that by preventing relapses, these tissues may repair themselves over time. However, it is also possible that tissue caused by NMO may be irreversible. Ongoing studies are being conducted to find ways to repair tissue damaged by NMO.
22. I haven’t had an NMO attack or flare-up for a long time, can I stop taking my medication or decrease its dosage? [+]
22. I haven’t had an NMO attack or flare-up for a long time, can I stop taking my medication or decrease its dosage? [-]
Because NMO can stay in remission for long periods of time, even years, it is important to consult with your physician and/or an NMO specialist to determine ongoing therapy.
Vaccinations are not known to cause NMO, and the benefits of immunization to protect against infection far outweigh risks. However, certain vaccines may not be advisable in the setting of specific types of immunosuppressive therapy. It is always best to consult with your physician and/or an NMO specialist to determine the best vaccine schedule in your case.
No, at this time there is no NMO-specific therapy. Agents used to treat NMO are approved to treat conditions other than NMO, but may be recommended by a neurologist or NMO specialist for use in treating NMO.
B cells are a special type of white blood cell that produces antibody. Because the NMO-IgG antibody is believed to play a role in causing NMO disease or relapse, B cells that make NMO-IgG are considered targets for NMO therapy. For example, rituximab targets and eliminates certain types of B cells that may produce NMO-IgG antibody. B cell monitoring is often used for patients after receiving rituximab infusions, which are often four-to-six months apart.
At the present time, the effectiveness of stem cell therapies for NMO is unknown. Consult with your physician and/or an NMO specialist.
Usually NMO occurs as a series of episodes or relapses. However, in approximately 10% of patients, it appears that a form of monophasic NMO exists. These patients may suffer from an acute episode of optic neuritis in one or both eyes, and have other hallmark signs such as transverse myelitis, but have no relapses. However, it is difficult to tell if such patients are in a long remission period, or have the monophasic form of disease, so drug treatment is usually continued.
Transverse myelitis is a medical term describing a condition in which inflammation is seen by MRI or other imaging methods to affect a section of the spinal cord. Inflammation can damage or destroy spinal cord, optic nerve, or brain tissue, including the protein insulation (myelin) that covers nerve cells.
Optic neuritis is caused by damage to the optic nerve due to acute or chronic inflammation. The optic nerve carries visual information from the eye to the brain. Inflammation of the optic nerve can cause damage to the myelin sheath covering it. Optic neuritis may occur in the form of loss of color vision, reduced visual field, and other symptoms. Optic neuritis is a serious condition that can lead to progressive vision loss or even blindness. Minimizing or preventing damage to the optic nerve is one of the primary reasons to seek medical care immediately if symptoms of optic neuritis occur or relapse.
Clinical research is medical research that involves patients. Patients, called subjects in clinical research, volunteer to participate in carefully designed and conducted studies seeking to find better ways to prevent, diagnose, treat, and eventually cure human disease. These advances come with improved understanding of the causes and effects of the disease. Clinical research includes clinical trials and clinical studies in which new treatments and strategies are tested in hopes of improving the health and wellness of patients. In addition, clinical research can focus on clinical science, which assesses discovery aspects of medicine, including disease onset or relapse risks, genetics, epidemiology, and other features associated with cause or variable manifestations of disease. All clinical research is required to adhere to careful protection of subjects and their information, and clinical trials in particular are regulated and monitored by the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH). For more information: National Institutes of Health
Clinical trials are designed to determine which medicines or procedures best benefit patients, and which may not. These studies often involve expert teams from academic, governmental and pharmaceutical sectors. In some cases, clinical trials seek to test the efficacy of a new drug for a disease which has no proven effective therapy. In other trials, one treatment is compared with another to examine which may be best is patients of differing disease stage or condition. Clinical trials are usually divided into different “phases”, each of which is designed to address a slightly different question:
Phase I : usually designed to test the “safety” and to learn the best dosing regimen of a new drug to minimize side effects. Subjects are usually healthy volunteers, and the study is often relatively short in duration. Subjects do not usually benefit from a Phase I study.
Phase II : usually designed to study the drug based on results from Phase I. Here, the drug, device, or procedure is evaluated in volunteer subjects who have the disease of interest. Phase II trials further refine safety, minimize adverse events, and begin to explore if and how the test agent may benefit the subject. Some volunteer subjects may benefit from a Phase II study.
Phase III: usually compares the test candidate (drug, device, or procedure) to a commonly used agent that has been proven to be at least somewhat effective in treating a condition, if one exists. This phase is designed to understand if the test agent is better than existing approaches, and where the agent might best fit in managing a particular disease. For more information: National Institutes of Health.
People participate in clinical trials for many reasons. Healthy individuals often say they participate to help others and to contribute to new or better ways to prevent or treat disease. Volunteers who have a disease also participate to help others, but may also receive new or improved experimental treatments. In addition, subjects who are involved in clinical trials receive additional care and attention from the clinical trial staff. Sometimes, blood relatives of the patients with diseases participate in certain trials which evaluate the genetic components that may pose potential disease risks. Information courtesy of nih.gov
People from all walks of life participate in clinical trials. Some are healthy, while others may have illnesses. Sometimes, blood or genetic relatives of a subject suffering for an illness can participate together in a clinical trial. Usually, each clinical trial or study specifies which subjects may participate. These terms are called the Inclusion Criteria or Exclusion Criteria. Factors that allow someone to participate in a clinical trial are “inclusion criteria.” Those that exclude or not allow participation are “exclusion criteria.” These criteria are based on factors such as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. Some research studies seek participants with illnesses or conditions to be studied in the clinical trial, others may need healthy volunteers whereas, some others, require both. Information courtesy of nih.gov
More Clinical Trial FAQs coming soon
To learn more about NMO (Neuromyelitis Optica), please visit our Video Library.