Materiały źródłowe

• #1 Neuromyelitis Optica (NMO): What It Is, Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/9858-neuromyelitis-optica-nmo

  Neuromyelitis optica (NMO) is an autoimmune disease, meaning it happens when your immune system attacks parts of your nervous system. It most commonly affects your eyes, spinal cord and certain parts of your brainstem. Attacks of this condition are treatable, and its possible to manage and reduce the risk of future attacks. […] NMO isn’t curable, but thanks to continuing research, this condition is treatable. Because NMO is an autoimmune condition, the main treatments take two forms: acute treatment and long-term management. […] Acute treatment focuses on treating the immediate effects of an NMO attack, especially inflammation. Corticosteroids (or other kinds of prescription anti-inflammatory drugs) are most common for this. Acute treatment is extremely important, as it reduces the risk of permanent damage from an attack.

• #2 Neuromyelitis Optica Spectrum Disorder (NMOSD) – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK572108/

  Neuromyelitis optica spectrum disorder (NMOSD) is an uncommon yet impactful inflammatory and demyelinating disorder of the central nervous system. NMOSD primarily targets the optic nerves, brainstem, and spinal cord, presenting a unique set of challenges for diagnosis and management. […] The focus extends to the treatment paradigm, which often involves chronic immunosuppressive therapy to prevent long-term optic nerve damage and relapse. The course provides a comprehensive understanding of the evaluation and management of NMOSD, equipping healthcare professionals with the knowledge and skills necessary to optimize patient care. Throughout the activity, the significance of the interprofessional team in evaluating and treating patients with NMOSD is underscored. Collaborative efforts among healthcare professionals ensure a holistic approach to managing this complex disorder.

• #2 Neuromyelitis Optica Spectrum Disorder (NMOSD) – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK572108/

  The nurse’s role is vital as these patients often require hospital admission with rapid induction of intravenous steroids. The pharmacist will be critical in adjusting the appropriate steroid dose for the patient while considering other conditions the patient may have. The radiologist is also key in d appropriately based on MRI results. There aren’t any large randomized clinical trials on diagnosing and treating NMOSD; therefore, reliance is primarily on consensus-based expert opinion, and diagnostic criteria are based on historical, case-control studies.

• #3 Neuromyelitis optica – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652

  Neuromyelitis optica care at Mayo Clinic […] Treatment to prevent relapses is important to help prevent disability. […] Neuromyelitis optica is often misdiagnosed as multiple sclerosis, also known as MS, or is seen as a type of MS. […] Neuromyelitis optica can cause blindness, weakness in the legs or arms, and painful spasms. […] Symptoms may get better and then worse again. When they get worse, it’s known as a relapse. […] Over time, relapses can lead to total blindness or loss of feeling, known as paralysis.

• #4

  https://link.springer.com/article/10.1007/s40120-021-00253-4

  Neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune condition characterized by unpredictable relapses that affect the optic nerves and spinal cord, which can lead to blindness, paralysis, and increased mortality rates. […] Findings of this large, retrospective, observational study indicate that relapses among patients with NMOSD are common in US clinical practice, leading to substantial healthcare utilization and expenditure. […] Therapies with the highest relapse risk reduction could lead to markedly lower relapse-associated healthcare utilization and clinical burden in patients with NMOSD. […] Patients with NMOSD experience recurrent, unpredictable, and debilitating relapses that can lead to blindness, paralysis, and increased mortality. […] To prevent relapses, immunosuppressive agents, such as azathioprine, mycophenolate mofetil, and rituximab, have historically been used off-label in clinical practice.

• #5 Distinguishing between neuromyelitis optica and multiple sclerosis

  https://www.medicalnewstoday.com/articles/neuromyelitis-optica-vs-ms

  Neuromyelitis optica and multiple sclerosis are two distinct conditions that require different treatments. Distinguishing between the two is crucial for people to get the proper treatment and care. […] It is an autoimmune disorder in which a persons white blood cells and antibodies attack the optic nerve and spinal cord. […] About 4,000 people in the United States are living with NMO. […] Appropriate treatments for MS and NMO are important for both conditions. […] An incorrect diagnosis of MS can be damaging to a person living with NMO. […] Instead, doctors may treat NMO with eculizumab (Soliris), inebilizumab-cdon (Uplinza), and satralizumab-mwge (Enspryng) when a person has anti-AQP4 antibodies. […] In NMO, each acute attack can cause debilitating symptoms with irreversible damage. This makes preventing NMO attacks an important part of treatment.

• #6 Optic neuritis: Differentiating MS from neuromyelitis optica

  https://www.ophthalmologytimes.com/view/optic-neuritis-differentiating-ms-from-neuromyelitis-optica

  The bottom line is that antibodies to aquaporin-4 are the pathogenesis of the periarterial inflammation in NMO compared with MS in which the extravasation of immunologically active cells emerge in perivenular location. […] He explained, based upon the elegant neuro-immunopathogenesis research of Claudia Lucchinetti, MD, of Mayo Clinic in Rochester, Minnesota, and others, that the current therapies are based on the following sequencing: first, IV methylprednisolone; second, plasmapheresis; and then either B-cell depletion, antiIL-6 therapy, or complement inhibition. […] NMO attacks can result in blindness, paralysis, and death from neurogenic respiratory failure. Incomplete recovery from attacks is the typical course that can result in cumulative disability. […] Three medications have received FDA approval for treating NMO: Uplizna (inebilizumab-cdon, Viela Bio) for B-cell depletion; Soliris (eculizumab, Alexion Pharmaceuticals Inc.) for complement inhibition; and Enspryng (satralizumab, Chugai Pharmaceutical) for antiIL-6 activity.

• #7 Neuromyelitis Optica Spectrum Disorder (NMOSD) | OHSU

  https://www.ohsu.edu/brain-institute/neuromyelitis-optica-spectrum-disorder-nmosd

  Dr. Jacqueline Bernard and the other providers at the OHSU Multiple Sclerosis Center have the expertise to identify and treat NMOSD. The OHSU Multiple Sclerosis Center offers advanced care for neuromyelitis optica spectrum disorder, a rare nerve disorder that requires immediate treatment. […] Youll find: Specialists with the expertise and latest tests to give you an accurate diagnosis. An experienced team that will tailor a treatment plan to your needs. Providers who will help you manage the effects of an attack. A range of therapies to help you manage any longer-term symptoms. […] Early diagnosis is important. Even one NMOSD attack increases the chance of lasting damage to your nervous system. At the Multiple Sclerosis Center, we bring you a detailed understanding of NMOSD so you can get the care you need.

• #8 Neuromyelitis optica (NMO) – Primary Care Notebook

  https://primarycarenotebook.com/pages/neurology/neuromyelitis-optica-nmo

  Neuromyelitis optica is a subacute demyelinating disease affecting the optic nerves and spinal cord. […] Diagnosis of neuromyelitis optica should be made by an appropriate specialist based on established up-to-date criteria. […] Untreated, approximately 50% of NMOSD patients will be wheelchair users and blind, and a third will have died within 5 years of their first attack. […] Management: relapses are treated aggressively to prevent residual disability with high-dose steroids and often plasma exchange. […] Relapse prevention is achieved with long-term immunosuppression.

• #9 neuromyelitis optica (NMO) – Nursing Notebook

  https://nursing-notebook.com/simplepage.cfm?ID=-999620577&linkID=11785

  Neuromyelitis optica is a subacute demyelinating disease affecting the optic nerves and spinal cord. […] Untreated, approximately 50% of NMOSD patients will be wheelchair users and blind, and a third will have died within 5 years of their first attack (3). […] Management (3): relapses are treated aggressively to prevent residual disability with high-dose steroids and often plasma exchange. […] relapse prevention is achieved with long-term immunosuppression.

• #10 Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4807395/

  Neuromyelitis optica spectrum disorder (NMOSD) is a rare, autoimmune disease of the central nervous system that primarily attacks the optic nerves and spinal cord leading to blindness and paralysis. […] Treatment of NMOSD is divided into two goals: suppression of acute inflammatory relapse and prevention of future relapses. […] The goals of acute treatment are to suppress the acute inflammatory attack, minimize CNS damage, and improve long-term neurological function. […] Building on decades of experience using corticosteroids to treat inflammatory attacks in multiple sclerosis and other inflammatory conditions, high-dose intravenous methylprednisolone was widely adopted as a first-line agent to broadly suppress inflammation in acute NMOSD relapses. […] The typical starting dose for treatment of NMOSD is 1000 mg of methylprednisolone intravenously for 5 days, commonly followed by an oral steroid taper for 28 weeks depending on the severity of the attack.

• #11 Neuromyelitis optica (NMO)

  https://www.nhs.uk/conditions/neuromyelitis-optica/

  If you’re diagnosed with neuromyelitis optica (NMO) you’ll need treatment to stop the inflammation in your nerves and reduce the risk of relapses. […] When your symptoms first start or if you’re having a relapse, where symptoms come back, the main treatments are: high dose steroid injections, plasma exchange, where some of your blood is removed, treated and then returned to your body, immunoglobulins (antibodies in the blood) given through a drip into your vein. […] You’ll usually also need to take medicines long term that reduce the activity of your immune system to help prevent relapses. These may include: immunosuppressants, such as azathioprine, steroid tablets, such as prednisolone, biological medicines, such as rituximab. […] You may also be offered medicines to help with any ongoing symptoms, such as: painkillers, antidepressant or anticonvulsant medicines that help with nerve pain, such as amitriptyline or gabapentin, muscle relaxant or anticonvulsant medicines to treat muscle spasms, such as baclofen or carbamazepine, medicines for bladder problems, such as oxybutynin, medicines for bowel problems, such as laxatives. […] To help with symptoms such as muscle weakness and mobility problems you may be offered: physiotherapy, including advice on exercises and stretching, occupational therapy to help with daily activities.

• #12 Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4807395/

  If there is minimal or no improvement with high-dose corticosteroids based on the judgment of the treating physician, the use of plasma exchange (PLEX) has been shown to be effective in NMOSD. […] In both cases of corticosteroids or corticosteroids plus PLEX, the expectation is that after an initial period of improvement due to resolution of secondary inflammation and edema, there is a period of 6-24 months during which the healing process can lead to further improvement in neurological function. […] Beyond high-dose corticosteroids and PLEX, researchers have experimented with other approaches to the treatment of acute NMOSD relapses. […] The first preventive therapy study in NMOSD was published in 1998 using azathioprine in seven subjects. […] Azathioprine is a purine analog that interferes with DNA synthesis of rapidly proliferating cells, especially B and T lymphocytes.

• #13

  https://journals.lww.com/neur/fulltext/2022/70020/therapeutic_plasma_exchange_in_neuromyelitis.40.aspx

  Therapeutic plasma exchange (TPE) is indicated in the acute presentation of neuromyelitis optica spectrum disorders (NMOSD) as category II indication as per American Society for Apheresis guidelines 2016. […] The addition of TPE as a part of therapy is effective and safe in acute exacerbations of NMOSD. […] Therapeutic plasma exchange as an add on therapy is effective and safe in acute attacks of NMOSD. […] The addition of TPE as part of therapy for NMOSD patients (both adult and pediatric) is effective and safe in acute exacerbations of NMOSD.

• #14 Diagnosing and Managing Neuromyelitis Optica

  https://www.uspharmacist.com/article/diagnosing-and-managing-neuromyelitis-optica

  The role of immunoglobulins (IVIG) has been studied and widely accepted in a multitude of neuroimmunologic conditions, such as myasthenia gravis and hypogammaglobulinemia. […] To date, there are not any randomized, controlled clinical trials comparing the clinical efficacy of different systemic immunosuppressants. […] The use of biologic immunosuppression to prevent relapses in NMOSD is becoming more prevalent while simultaneously becoming more costly. […] Clinical pharmacists in a variety of practice settings, including but not limited to managed care, hospital, and ambulatory centers, are involved in the utilization and management of patients with NMO/NMOSD.

• #15 Distinguishing between MS and neuromyelitis optica with optic neuritis

  https://www.modernretina.com/view/distinguishing-between-ms-and-neuromyelitis-optica-with-optic-neuritis

  Physicians should hospitalize ON patients to prevent blindness, possible death. […] Ophthalmologists must assume that every case of ON is NMO until the diagnostic study results are received, he advised. Because of the risk of NMO with ON proceeding to ischemic damage in the retina, treatment with high-dose corticosteroids is time-sensitive. […] An aggressive treatment approach is mandatory in NMO as is collaboration with other specialists. Ophthalmologists are advised to quickly refer patients to the emergency department for neuroimaging of the optic nerves, brain, and spinal cord. There should be admission to the hospital, administration of intravenous (IV) steroids, and collaboration with neurology or neuro-ophthalmology while awaiting the NMO titer results. […] It is no longer an option to wait to perform imaging, he said. All ON patients should be hospitalized. NMO and MS cannot be differentiated clinically, and NMO must be treated to prevent strokes in the optic nerve and retina.

• #16 Optic neuritis: Differentiating MS from neuromyelitis optica

  https://www.ophthalmologytimes.com/view/optic-neuritis-differentiating-ms-from-neuromyelitis-optica

  Neuromyelitis optica [NMO] was a subject touched on briefly when I was in medical school and was extremely difficult to diagnose quickly, he said. […] Ophthalmologists must assume that every case of ON is NMO until the diagnostic study results are received, he advised. Because of the risk of NMO with ON proceeding to ischemic damage in the retina, treatment with high-dose corticosteroids is time-sensitive. […] An aggressive treatment approach is mandatory in NMO as is collaboration with other specialists. […] There should be admission to the hospital, administration of intravenous (IV) steroids, and collaboration with neurology or neuro-ophthalmology while awaiting the NMO titer results. […] NMO has gone through a major therapeutic advance, Sergott pointed out. NMO is related to ophthalmology through the retinal blood vessels and those in and around the optic nerve.

• #16 Optic neuritis: Differentiating MS from neuromyelitis optica

  https://www.ophthalmologytimes.com/view/optic-neuritis-differentiating-ms-from-neuromyelitis-optica

  The bottom line is that antibodies to aquaporin-4 are the pathogenesis of the periarterial inflammation in NMO compared with MS in which the extravasation of immunologically active cells emerge in perivenular location. […] He explained, based upon the elegant neuro-immunopathogenesis research of Claudia Lucchinetti, MD, of Mayo Clinic in Rochester, Minnesota, and others, that the current therapies are based on the following sequencing: first, IV methylprednisolone; second, plasmapheresis; and then either B-cell depletion, antiIL-6 therapy, or complement inhibition. […] NMO attacks can result in blindness, paralysis, and death from neurogenic respiratory failure. Incomplete recovery from attacks is the typical course that can result in cumulative disability. […] Three medications have received FDA approval for treating NMO: Uplizna (inebilizumab-cdon, Viela Bio) for B-cell depletion; Soliris (eculizumab, Alexion Pharmaceuticals Inc.) for complement inhibition; and Enspryng (satralizumab, Chugai Pharmaceutical) for antiIL-6 activity.

• #17 Neuromyelitis optica – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/diagnosis-treatment/drc-20375655

  Diagnosing neuromyelitis optica involves a physical exam and tests. […] A healthcare professional reviews your medical history and symptoms and does a physical exam. […] Our caring team of Mayo Clinic experts can help you with your neuromyelitis optica-related health concerns. […] Neuromyelitis optica can’t be cured. But treatment can sometimes lead to a long-term period with no symptoms, known as remission. NMO treatment involves therapies to reverse recent symptoms and prevent future attacks. […] Healthcare professionals also can help manage other possible symptoms, such as pain or muscle problems. […] Your healthcare professional might recommend that you take a lower dose of corticosteroids over time to prevent future NMO attacks and relapses. […] Monoclonal antibodies have been shown in clinical trials to be effective in reducing the risk of NMO relapses. […] Intravenous immunoglobulins, also known as antibodies, may decrease the relapse rate of NMO.

• #18 Symptoms | Stanford Health Care

  https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/neuromyelitis-optica/symptoms.html

  Long-term treatment is critical in fending off NMO flare-ups. […] Our specialists might prescribe one of three immunosuppressants: Azathioprine (Imuran, Azasan), Mycophenolate (CellCept), Rituximab (Rituxan). […] Our physical and occupational therapists are especially skilled in treating people with NMO and other complex autoimmune and neurological disorders. […] Your rehabilitation and therapy may include: Physical therapy for improving mobility, strength, coordination, and balance, Occupational therapy for performing daily activities, such as getting dressed, cooking, and driving.

• #19 Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4807395/

  The combined experience with azathioprine in NMOSD suggests the medication has an approximately 50/50 chance of preventing additional relapses. […] Mycophenolate mofetil, like azathioprine, is a purine analog anti-metabolite which interferes with lymphocyte proliferation. […] B cell depletion with anti-CD20 monoclonals as a treatment for autoimmune disease was first demonstrated in rheumatoid arthritis using rituximab in 2004, and since then has been used to treat a wide number of autoimmune conditions including myasthenia gravis, lupus, and multiple sclerosis that share immunopathogenic mechanism with NMOSD. […] Symptomatic treatment of immobility, neuropathic pain, spasticity, urinary retention/incontinence, depression, fatigue, and cognitive dysfunction in NMOSD patients have not been adequately studied, especially compared to the numerous studies of immunotherapies to prevent relapses.

• #20 Seeing a difference in neuromyelitis optica… | Neurology Academy

  https://neurologyacademy.org/articles/seeing-a-difference-in-neuromyelitis-optica-spectrum-disorder-integrating-novel-strategies-into-care

  Sean Pittock looked at treatment goals for those with NMO, stating that the rapid progression of NMO requires aggressive immunosuppressive therapy. […] He also shared that traditional approaches using immunosuppression (steroids and azathioprine) or B-cell targeted therapy (rituximab) have not been proven at a phase 3 trial, 40-80% of patients will relapse at last follow-up using these therapies. […] He presented the findings of the latest phase 3 trials for eculizumab (PREVENT), inebilizumab (N-MOmentum) and satralizumab (SAKura-Sky and SAKura-Star), detailing their results, and any adverse effects.

• #21 Neuromyelitis Optica Spectrum Disorder (NMOSD) | Autoimmune Disorders | University Hospitals | Cleveland, OH | University Hospitals

  https://www.uhhospitals.org/services/neurology-and-neurosurgery-services/conditions-and-treatments/multiple-sclerosis-and-neuroimmunology/neuromyelitis-optica-spectrum-disorder

  The Neurological Institute at University Hospitals offers comprehensive care for patients with Neuromyelitis Optica Spectrum Disorder. Our multidisciplinary program includes: […] The Neuromyelitis Optica Syndrome Disorder (NMOSD) clinic is part of the UH Multiple Sclerosis and Neuroimmunology Program. It provides patients with access to specialists with extensive experience in the acute and long-term management of all aspects of this rare disease. […] Patients with NMOSD can also have other autoimmune disorders like systemic lupus erythematosus or Sjogren syndrome. […] Corticosteroids usually given in high doses intravenously can shorten relapses and decrease symptoms. […] Eculizumab is a complement inhibitor that can limit the autoimmune attacks in patients with NMOSD with AQP4. […] Several symptomatic medications are available to treat nerve pain, tonic spasms, constipation, and bladder symptoms in NMOSD patients.

• #22 Orphanet: Neuromyelitis optica spectrum disorder

  https://www.orpha.net/en/disease/detail/71211

  A rare inflammatory disease of the central nervous system characterized mainly by attacks of uni- or bilateral optic neuritis (ON) and acute myelitis. […] Acute attacks are treated with high dose intravenous corticosteroids and if this fails, with plasma exchange. For patients with AQP4 antibodies, three agents are approved (in the USA and Europe) eculizumab, inebilizumab and satralizumab, and which reduce clinical attacks by 75-95%. Alternative maintenance treatments for patients with AQP4 antibodies or MOG antibodies are immunosuppressive drugs (e.g. azathioprine or mycophenolate mofetil), often combined with corticosteroids, or rituximab. […] The prognosis is variable: patients may recover completely from individual attacks, but residual neurological deficits are common and sometimes severe. Unrecognized or untreated, up to 30% of patients may die in the first 5 years of their illness due to an attack of severe myelitis leading to respiratory failure. A high proportion of patients will become legally blind in one or both eyes and/or have substantial residual paraparesis. The prognosis for good recovery from attacks is much better for those with MOG antibodies compared to those with AQP4 antibodies.

• #23 Neuromyelitis Optica (NMO): What It Is, Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/9858-neuromyelitis-optica-nmo

  Long-term management involves suppressing or modulating your immune system, which minimizes its ability to damage your nervous system. This can prevent NMO attacks or at least limit how severe they are or how long they last. […] Some of the most important things you can do include: Take your medication. Whether you’re recovering from an NMO attack or have gone for a long time without one, it’s essential to take your medication as prescribed. Medications can prevent or reduce damage from an ongoing attack and can reduce the risk of future attacks. […] Follow-up visits are key with NMO so your healthcare provider can monitor the effects of this condition. Routine blood testing is common with NMO, showing your provider how active your immune system is. That allows them to adjust your medications(s) if necessary. […] If you take immune-suppressing medications, that lowers your immune system’s ability to attack your nervous system. Unfortunately, it also can lower your immune system’s ability to fight contagious illnesses like the common cold, the flu, COVID-19, pneumonia and urinary tract infections (UTIs).

• #24 Neuromyelitis Optica | Brigham Multiple Sclerosis Center

  https://brighammscenter.org/clinical-programs/neuromyelitis-optica

  The standard of care for an initial attack of NMO includes the following: […] Because the likelihood of recurrence is greater than 90 percent and attacks are generally severe, ongoing treatment to suppress the immune system is considered necessary. […] Some of the medications used for maintenance therapy include: […] MRI has been an extremely valuable tool used to establish an early diagnosis and monitor disease progression in NMO. […] The blood test that any physician can order is known as NMO-IgG. […] If the blood test for NMO-IgG is negative and the diagnosis is unclear, a neurologist may suggest a lumbar puncture or „spinal tap” for further testing. […] To help obtain a correct diagnosis, patients may be referred to an ophthalmologist or eye specialist.

• #25 Neuromyelitis optica spectrum disorder (NMOSD) in children – Children’s Health Neurology

  https://www.childrens.com/specialties-services/conditions/neuromyelitis-optica-spectrum-disorder

  NMOSD is very rare and affects approximately 4,000 Americans and 250,000 people worldwide. Only about 4% of NMOSD diagnoses occur in children, which is why its critical to seek care from pediatric specialists like those at Childrens Health who have experience diagnosing and treating it. […] A child with NMOSD may experience: Breathing problems, Loss of bladder and bowel control, Numbness, weakness or paralysis in the arms and legs, Pain or vision loss in one or both eyes. […] At Childrens Health, we see hundreds of children with demyelinating diseases every year. We have the expertise and the latest diagnostic tools to correctly diagnose the condition and start your child on the right treatment plan. […] Our pediatric clinic is among a select few in the country that offers optical coherence tomography (OCT). This painless eye scan provides detailed images of the optic nerves, helping us detect optic neuritis.

• #26 Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4807395/

  Following acute treatment of NMOSD transverse myelitis with high-dose corticosteroids/plasma exchange, the objective is to return to baseline neurological function. […] There are four general classes of pain medications commonly used in NMOSD patients: (1) anti-epileptic medications (e.g., gabapentin, carbamazepine), (2) anti-spasmodics (e.g., baclofen, tizanidine), (3) anti-depressants (e.g., amitriptyline, duloxetine), and (4) analgesics (e.g., tramadol, opiates). […] The most widely recommended option by urologists is clean, intermittent self-catheterization at least three times daily or more often depending on bladder volumes throughout the day. […] Psychological issues related to NMO may be due to direct inflammatory influence on higher neuronal circuitry or may be related to complications from optic neuritis and transverse myelitis.

• #27 Neuromyelitis Optica Spectrum Disorder (NMOSD) | Autoimmune Disorders | University Hospitals | Cleveland, OH | University Hospitals

  https://www.uhhospitals.org/services/neurology-and-neurosurgery-services/conditions-and-treatments/multiple-sclerosis-and-neuroimmunology/neuromyelitis-optica-spectrum-disorder

  Some NMOSD patients may require botulinum toxin injections or intrathecal baclofen pump to treat spasticity (increased stiffness and spasms of the legs and arms after NMOSD attacks). […] Some NMOSD patients may require spinal cord stimulators to address intractable pain and/or bladder stimulators for bladder dysfunction. […] Physical and occupational therapy: including gait/balance training and visual/motor occupational therapy.

• #28 Neuromyelitis Optica | Stanford Health Care

  https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/neuromyelitis-optica.html

  Neuromyelitis optica (NMO) is an autoimmune disorder that mainly affects the eyes and spinal cord. […] At Stanford Health Care, you receive care from multiple specialists who address all your symptoms and any complications from the disease. […] In general, treatment for NMO focuses on treating the initial attack, then preventing future attacks and reducing their severity. […] Our specialists create a customized treatment plan, which may include one or more types of medication to prevent attacks and manage symptoms. […] Long-term treatment is critical in fending off NMO flare-ups. […] Our physical and occupational therapists are especially skilled in treating people with NMO and other complex autoimmune and neurological disorders. […] Your rehabilitation and therapy may include: Physical therapy for improving mobility, strength, coordination, and balance. […] Occupational therapy for performing daily activities, such as getting dressed, cooking, and driving. […] Our skilled team precisely diagnoses and offers the latest therapies for neuromyelitis optica, a severe autoimmune disorder related to multiple sclerosis.

• #29 NMOSD | Neuromyelitis Optica Spectrum Disorder | Long-Term Care | SRNA

  https://wearesrna.org/living-with-myelitis/disease-information/neuromyelitis-optica-spectrum-disorder/long-term-care/

  After the acute phase, rehabilitative care to improve functional skills and prevent secondary complications of immobility involves both psychological and physical accommodations. […] The long-term management of NMOSD requires attention to a number of issues. These are the residual effects of any spinal cord injury or injury to the optic nerve. […] During the early recovery period, family education is essential to develop a strategic plan for dealing with the challenges to independence following return to the community. […] An appropriate strengthening program and an aerobic conditioning regimen are recommended. […] Individuals with NMOSD may find ordinary tasks such as dressing, bathing, grooming, and eating very difficult. Many of these obstacles can be mastered with training and specialized equipment. […] Occupational therapists are specialists in assessing equipment needs and helping people with limited function perform activities of daily living. […] Physical therapists assist with mobility. Besides teaching people to walk and transfer more easily, they can recommend mobility aids.

• #30

• #31 Journal of Rehabilitation Medicine – Multidisciplinary rehabilitation for adults with neuromyelitis optica spectrum disorders: A pilot study – HTML

  https://www.medicaljournals.se/jrm/content/html/10.2340/16501977-2587

  Objective: To provide detailed data on the effects of multidisciplinary rehabilitation for patients with neuromyelitis optica spectrum disorder with moderate to severe disability. […] The intervention group received multidisciplinary rehabilitation 5 times/week for 4 weeks in a hospital, and the patients were guided to continue community- or home-based rehabilitation for 3 months. […] These results suggest that multidisciplinary rehabilitation potentially promotes motor functional recovery in patients with neuromyelitis optica spectrum disorders. […] The aim of this study is to investigate the effects of multidisciplinary rehabilitation for patients with neuromyelitis optica spectrum disorders who have moderate to severe disability. […] In the patients who underwent multidisciplinary rehabilitation, bowel and bladder and motor functions (pyramidal and walking function) were improved compared with those with usual care.

• #32 Journal of Rehabilitation Medicine – Multidisciplinary rehabilitation for adults with neuromyelitis optica spectrum disorders: A pilot study – HTML

  https://www.medicaljournals.se/jrm/content/html/10.2340/16501977-2587

  The results also suggest that multidisciplinary rehabilitation is a safe and feasible therapy for adults with neuromyelitis optica who have severe disability. […] This study demonstrated the benefit of MDR in patients with disability resulting from NMOSD, as assessed by EDSS and FS. […] The EDSS score improved at 4 weeks after treatment in the MDR group, which indicated that rehabilitation treatment promotes or speeds up the patients recovery process. […] Moreover, the results indicated that the bowel and bladder, pyramidal, and walking functions of patients with NMOSD might recover after 4 weeks with MDR treatment. […] This study confirmed the short-term effectiveness of MDR in patients with NMOSD in terms of improving impairment, as determined using the EDSS. […] Bowel and bladder, cerebral (or mental), pyramidal, and walking functions may benefit more from MDR, while sensory dysfunction required the longest period for recovery. […] These primary observations will be helpful to all medical practitioners treating MDR in patients with NMOSD, and they advocate that patients with NMOSD should be candidates for early MDR in order to prevent the progression of neurological disability.

• #33 Seeing a difference in neuromyelitis optica… | Neurology Academy

  https://neurologyacademy.org/articles/seeing-a-difference-in-neuromyelitis-optica-spectrum-disorder-integrating-novel-strategies-into-care

  Kazuo Fujihara discussed early diagnosis as essential for reducing the burden of disease. […] He also shared how essential it is to understand the differences between MS and NMO, highlighting that the disease-modifying treatments for MS can exacerbate NMO. […] Current treatments include high dose steroids, azathioprine, mycophenolate mofatil, rituxumab, methotrexate. […] Three new treatment choices have just passed their phase 3 trials specifically for NMO: eculizumab, inebilizumab and satralizumab. […] Kazuo ended by highlighting that reduced quality of life was another marker of NMO, with most patients having had an initial diagnosis other than NMO. […] He noted findings from Beekman, 2019 that a delayed diagnosis often had a strong negative impact on people’s physical function, and the many people experienced: increased pain, bladder and bowel problems, sexual dysfunction, an inability to work.

• #34 Neuromyelitis Optica Spectrum Disorder (NMOSD) | OHSU

  https://www.ohsu.edu/brain-institute/neuromyelitis-optica-spectrum-disorder-nmosd

  Its critical to treat an NMOSD attack as quickly as possible to reduce inflammation of your optic nerve or spinal cord. After a flare-up, your care team will most likely recommend ongoing care to lower the chances of a relapse. […] We offer rehabilitation services and other therapies to help you manage long-term issues from NMOSD. Our experts can help you with: Spasticity (muscle stiffness and spasms): We may recommend exercises and daily stretching to keep your muscles more flexible. Medications can also help. We may suggest splints at the ankles, wrists or elbows to help you with daily activities. […] Depression: Its normal to feel sad or stressed after an NMOSD diagnosis. If your feelings interfere with your relationships or daily life, you may have depression that should be treated. Our team can help with counseling and medications.

• #35 Resources for Living With NMOSD

  https://www.nmosdwontstopme.com/resources

  Becoming unstoppable starts with establishing the right support system and finding resources to take control of your neuromyelitis optica spectrum disorder (NMOSD). […] When living with NMOSD, its important to prioritize your physical, mental and emotional health equally. […] Find resources that can help you be there for a loved one with NMOSD, while also taking care of yourself. […] Send an online message or call (800) 793-4670 to speak with a member of the Guthy-Jackson patient advocacy team who can answer questions you may have about living with NMOSD. […] Complete a few survey questions or call (855) 380-3330 to receive information that may help you along your disease journey. […] By calling, you can access free and confidential case management assistance in three key areas, including health insurance navigation (insurance applications, out-of-pocket costs, denials, benefits understanding, etc.), disability support services (including assistance with appeals) and financial guidance (to reduce medical costs and everyday expenses).

• #36 Neuromyelitis Optica & MOG Antibody Disorder Treatment & Research Program | NYU Langone Health

  https://nyulangone.org/care-services/multiple-sclerosis-comprehensive-care-center/neuromyelitis-optica-mog-antibody-disorder-treatment-research-program

  Experts at the Neuromyelitis Optica and MOG Antibody Disorder Treatment and Research Program, part of NYU Langones Multiple Sclerosis Comprehensive Care Center, provide treatment, counseling, and education for people with this condition and their families. […] Care for people with NMOSD and MOGAD is provided by our dedicated team, which includes neurologists, neuro-ophthalmologists, a neuro-urologist, nurse coordinators, social workers, occupational therapists, and psychologists. […] The key to preventing disability in NMOSD and MOGAD is in preventing relapses. […] During relapse, we prescribe intravenous steroids to help speed recovery. This may be combined with plasmapheresis, which is a way to remove disease-triggering antibodies from the blood. […] A variety of medications, as well as non-medication approaches, are available to alleviate common symptoms of these diseases.

• #37 Neuromyelitis Optica

  https://www.webmd.com/brain/neuromyelitis-optica-nmo

  Its important to eat a healthy, well-balanced diet when you have NMO. Your body works best when it has all the nutrients it needs. Eating well also helps your medications and treatments work. […] Its likely that you’ll have a little more weakness or damage to your body with each attack. This may include changes in your arms and legs or problems with your vision. In rare cases, some people with NMO need a ventilator to breathe. […] Taking medication to prevent attacks can help lower your chance of symptoms and permanent damage. Talk with your doctor about which meds may work best for you. […] Because your symptoms will probably get worse over time, its key to build a support system that includes: Friends, Family members, Support groups, Health care workers. […] Dont be afraid to ask for help. Your doctor can help you find the assistance you need.

• #38 Neuromyelitis Optica Spectrum Disorder | UK Healthcare

  https://ukhealthcare.uky.edu/kentucky-neuroscience-institute/conditions/multiple-sclerosis-neuroimmunology/neuromyelitis-optica-spectrum-disorder

  No curative treatment for NMOSD exists, so treatment will focus on alleviating symptoms and mitigating the risk of future attacks. […] To reduce the inflammation related to an acute attack, your medical provider will likely prescribe an intravenous infusion of corticosteroid. […] Plasma exchange (plasmapheresis) is also often used in addition to steroids. […] To prevent future attacks, your medical provider may recommend you take a low dose of corticosteroids for a long period of time. […] Because NMOSD is a chronic disorder, treatment is ongoing. […] Your medical provider will recommend a regimen of care that includes how often follow-up appointments are needed. […] In cases where vision impairment or movement-related symptoms linger, your provider may recommend the use of adaptive devices and equipment.

• #39 Planning for Caregivers of People with NMO | Neuromyelitis-Optica.netShare to Facebookprint pageBookmark for latercaret iconFollow us on facebookFollow us on instagramFollow us on facebookFollow us on linkedincaret icon

  https://neuromyelitis-optica.net/caregiver-planning

  People with neuromyelitis optica spectrum disorder (NMO) might be cared for by family or friends. Sometimes this extra support is only needed during a first episode or during attacks. […] Providing care for someone with NMO changes over time, based on their symptoms and the level of help they need. This can become very challenging for the caregiver. This is especially true because NMO and the damage it causes is so different from person to person. How can you prepare yourself and your home for what is to come? […] As NMO progresses, you may need additional help. A trained home healthcare professional can help with medical care, safely moving the person, changing soiled undergarments or bed pads, and feeding. […] Sometimes, home caregiving cannot provide the level of help your person needs, especially if their breathing is affected. When this time comes, moving to assisted living may be required to keep your person as healthy as possible.

• #40 Planning for Caregivers of People with NMO | Neuromyelitis-Optica.netShare to Facebookprint pageBookmark for latercaret iconFollow us on facebookFollow us on instagramFollow us on facebookFollow us on linkedincaret icon

  https://neuromyelitis-optica.net/caregiver-planning

  Talk to the person’s doctor about any symptoms that arise and how to best deal with those. Become educated on ways to help your person manage their symptoms, especially as the disease progresses. […] Caregivers should take care of themselves to help reduce the risk of burnout, depression, anger, and staying healthy. Caregivers cannot care for others if they themselves are not well. […] Caregiving for someone with NMO is a wonderful thing to do, but it is not easy. Caregivers need to take time for themselves so they are able to better take care of others. If caregiving starts to become detrimental to a caregiver’s health or well-being, then talk to someone immediately. Everyone needs help sometimes, and it is nothing to be ashamed of.

• #41 Neuromyelitis Optica Spectrum Disorder | Peter O’Donnell Jr. Brain Institute | Condition | UT Southwestern Medical Center

  https://utswmed.org/conditions-treatments/neuromyelitis-optica-spectrum-disorder/

  Our individualized, multidisciplinary treatment plans work to maximize each persons abilities and minimize disabilities. A patients care team might include: Clinical nurses, Neurologists, Advanced practice providers (physician assistants and nurse practitioners), Neuro-ophthalmologists, Neuropsychologists and psychiatrists, Neuroradiologists, Occupational therapists, Physical therapists, Rehabilitation specialists, Social workers, Registered dietitians, Urologists. […] Acute therapy includes high doses of corticosteroids and, in some patients, plasma exchange therapy. Other interventions are considered on an individual basis. Beyond the anti-inflammatory therapies, rehabilitation for patients with spinal cord damage is essential to recovery. […] Once NMOSD is diagnosed, especially when anti-AQP4 antibodies are present, we develop a treatment plan to prevent relapses. While immunosuppression has been used for more than a decade in NMOSD, multiple trials for NMOSD-specific treatments are increasing and showing promise in their ability to prevent relapses.

• #42

  https://link.springer.com/article/10.1007/s40120-021-00253-4

  The mean annualized total expenditure for NMOSD relapses was $10,070 (95% CI $772612,660), with hospital/inpatient care requiring more expenditure than ambulatory/outpatient care. […] Our findings suggest that relapses are common in patients with NMOSD and that a subset of severely affected patients (those with three or more relapses) account for a disproportionate burden of disease. […] Our findings also indicate that annual healthcare expenditure attributed to the treatment and management of NMOSD is considerable (more than $50,000 per patient in total) in both the hospital/inpatient and ambulatory/outpatient settings, and, in particular, among the subset of patients who experienced relapses. […] Relapses in NMOSD are unpredictable and can be devastating, leading to permanent disability.

• #43 Health utilities and costs for neuromyelitis optica spectrum disorder | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02310-z

  The burden on carers is significant, with over 22% of carers spending more than 100 hours per week caring for NMOSD patients, and 40% reporting impact on their employment. […] This research represents a significant contribution to documenting and quantifying the resource use, costs and health outcomes of patients with NMOSD in the UK. The study also shows the substantial amount of informal care provided by family members and impacts on their health.

• #44

  https://link.springer.com/article/10.1007/s10072-023-07146-4

  This research aimed to investigate the experience of Neuromyelitis Optica Spectrum Disorders (NMOSD) by integrating the perspectives of patients, caregivers and clinicians through narrative-based medicine to provide new insights to improve care relationships. […] Caregivers narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide. […] Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension. […] The Narrating Neuromyelitis Optica Spectrum Disorders project is the first experience in Italy where patients are given a voice and the opportunity to tell their daily challenges.

• #45

  https://link.springer.com/article/10.1007/s10072-023-07146-4

  A final consideration on the role of writing was an opportunity for people with NMOSD to share their experience and a tool to raise awareness for caregivers and health care professionals, who judge this novel tool as an opportunity to broaden their views on patient experiences and relationships. Narrative Medicine can be methodologically integrated into clinical practice.

• #46 Neuromyelitis Optica (NMO) Treatment | Rush

  https://www.rush.edu/services/neuromyelitis-optica-nmo-services

  Getting a second opinion for an NMO diagnosis or prescribed treatment can help you make decisions about your care with confidence. […] NMO is not a curable condition. But early intervention and treatment can stop progression of the disease, prevent disability and prevent relapses. The goal is to maintain or improve your quality of life.

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