Chronic Symptoms.

Because NMOSD and MOGAD affect the central nervous system, they can cause symptoms beyond specific inflammation and demyelination.  Understanding and addressing your day-to-day symptoms can help to manage or even eliminate them.  Here are some useful themes based on experience from patients, caregivers and neurology experts:


As NMOSD and MOGAD can be demyelinating, these diseases may reduce, disrupt or exaggerate pain signals within the body.  Some pain signals may come from actual tissue lesions caused by tissue inflammation or edema.  This type of pain is known as nociceptive pain. This type of pain usually involves nerve injury, and is often described by patients as having sharp, shooting, stabbing or burning sensations that wax and wane from day to day.  Nociceptive pain is typically associated with areas in the central nervous system that have active demyelinating lesions.  Pain signals may also result from the miscommunication of nerves to brain, even if there is no specific tissue lesion or injury.  This type of pain is known as neuropathic pain.  Neuropathic pain is often described as pins and needles, tingling, numbness or loss of sensation.  It can localize to sites in the central nervous system affected by NMOSD or MOGAD, but may also occur at sites distant from the spinal cord or optic nerves, such legs and feet.  Another type of pain that may be experienced in NMOSD or MOGAD is called neurospastic pain.  This type of pain occurs if muscular tone is excessive due to altered nerve pathways controlling the muscles.  Stiffness or cramping of muscle can be significant, leading to temporary or sustained pain.  A fourth type of pain is known as radicular pain.  This form of pain means it begins in one place in the body and radiates to other places.  Most commonly, radicular pain may originate in the lower back and radiate to the legs, knees or feet.  Radicular pain may be due to NMOSD or MOGAD, but of course can occur in otherwise healthy individuals particularly with aging.  Pain that is caused by NMOSD or MOGAD may flare up from time to time or occur chronically.  Depending on the type(s) of pain, its severity and acute or chronic pattern, certain medicines may be helpful for you.  Different types of pain often require different treatments.  Your neurologist or a pain specialist may prescribe medications; if so their use is often customized to each person to find the lowest dose that achieves relief.  Some of these medicines target nerve tissue to interfere with pain signals, others target broader ways that pain occurs.  Physical therapy may also be part of healthy pain management, including special exercises, stretching routines or yoga approved by your doctor.  Pain may also benefit from icing or warming methods, therapeutic massage or alternative methods such as acupuncture or related practices focusing on the affected areas of the body.  Medications, exercises or other practices to manage pain should be under the direction of your NMOSD or MOGAD specialist and/or physical therapist.

 Fatigue / Lethargy:

Fatigue or lethargy can be common symptoms in NMOSD or MOGAD patients, especially early after diagnosis.  Patient experience teaches that fatigue can result from a number of factors, some of which are due to NMOSD or MOGAD or their treatment—and some of which are not directly due to these illnesses.  For example, fatigue can result from increased stress, pain, depression and other psychological factors as well as suboptimal sleep.

 Bowel / Bladder Issues:

Bowel or bladder incontinence or retention can be experienced by NMOSD and MOGAD patients when inflammation in the central nervous system is localized to nerves that control these functions.  It is important to understand the difference between bowel or bladder incontinence or retention and gastrointestinal or urinary tract infection.  Infection is usually characterized by burning, itching or perhaps even blood present in urine.  Similarly, gastrointestinal infections tend to be associated with nausea or vomiting, loose stool or diarrhea, and blood may be present in the stool.  Fever often accompanies infection, but is usually absent in basic incontinence or retention.

 Cognition Issues:

Some NMOSD or MOGAD patients report a sense that they lose the ability to concentrate or maintain clarity in thinking from time to time or for longer periods of time.  Autoimmune diseases that affect the central nervous system have the potential to affect functions of the brain—so it is only natural that there may be concerns about diminished cognition.  However, it is also important to realize that some loss in the ability to concentrate or remember names, faces or facts is also natural in the course of aging.

 Sleeping Issues:

Trouble sleeping meets us all at some point in life.  Disrupted patterns of sleep or the inability to sleep healthfully is called insomnia.  Insomnia can be caused directly due to NMOSD or MOGAD affecting neural sleep centers located in the brain stem.  It can also be caused by other factors, including pain, depression or stress.  In some cases, NMOSD or MOGAD can result in a condition known as narcolepsy—where patients experience an excessive or uncontrolled urge to sleep.  Quality sleep is an important part of a complete health & wellness plan.

 Psychological Issues:

Any difficult diagnosis can lead to concerns that affect optimism and outlook.  A sense of loss, grief and fear are not uncommon in patients who have a diagnosis of NMOSD or MOGAD.  In turn, these feelings can manifest as depression or isolation syndromes that add to physical effects of these conditions.  Addressing emotional or psychological impacts caused by NMOSD or MOGAD is as important as addressing their medical impact.  It is key that patients and caregivers communicate their feelings openly and honestly to healthcare providers.  Doing so is not a sign of weakness or giving up—just the opposite—asking for help is a sign of refusing to give up.

Every patient affected by NMOSD or MOGAD may experience one or more of these issues, and no two patients have the exact same journey.  Each of these symptoms may be occasional, episodic or they may persist.  The key is to make sure your neurologist and other members of your healthcare team know about any intermittent or chronic symptoms that negatively affect your quality of life.  Treatments and methods to minimize or resolve such symptoms are available, and clinical studies are ongoing to understand such issues and find ways to stop them.

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