Acute Treatments
Treatment for these disorders in their acute or early stages involves quieting down the immune system as quickly as possible, before damage is done. These treatments need to be considered in the context of the correct diagnosis and administered as quickly as possible. Time is critical. Unfortunately, there is very little research and almost no scientific evidence available as to the most effective treatments for any one of these disorders. It is important to be working with a physician who has good experience with these disorders, because acute treatment is going to involve primarily or exclusively clinical judgment. If your physician does not have this experience, it is important to ask your physician to consult with a physician who does.
There are very few clinical centers with physicians who specialize in TM or NMOSD (e.g., University of Texas Southwestern, Johns Hopkins University, Mayo Clinic, University of California San Francisco, Walton Centre – Liverpool, England), but there are numerous Multiple Sclerosis Centers associated with prominent medical centers and medical schools. A specialist from one of these centers should be considered, as they have experience in demyelinating disorders of the central nervous system. The acute therapies most frequently used to treat an inflammatory attack include: high dose intravenous steroids (methylprednisolone), Plasmapheresis (Plasma Exchange or PLEX), Immunoglobulin Therapy (IVIG), and cyclophosphamide.
After the inflammation has begun to resolve and the person is medically stable, the next course of treatment for a person who has an inflammatory attack in their spinal cord (ADEM, AFM, MOGAD, NMOSD, MS or TM) involves intensive rehabilitation therapy. Centers devoted to spinal cord injury and disease or stroke offer comprehensive rehabilitation programs for people who have suffered significant spinal cord deficits from the inflammatory attack. Children and adults who have experienced significant muscle weakness or paralysis should be admitted to a specialized rehabilitation hospital, and the program should include an aggressive physical and rehabilitative therapy regimen (as opposed to an exclusive emphasis on independence training).
AFM is considered monophasic. Most cases of ADEM and TM are also considered monophasic. It is important to have regular appointments with a neurologist to monitor the progress of the disease, if any. Over time and depending on symptoms, a yearly exam might be sufficient for many people. The symptoms from these disorders can be quite challenging to manage and can change over time. Other specialists should be considered in consultation with a neurologist and general practice physician or pediatrician (e.g., urology, psychiatry, orthopedics, and physiatry).
People with MOGAD, NMOSD, Recurrent TM, or recurrent ADEM are at risk for multiple attacks and should be monitored more closely. People with these disorders will likely receive medication to either diminish the chance of another attack, or lessen its severity should it occur. It is important that a definitive differential diagnosis from MS be made by a physician. The MS treatments (i.e., Avonex, Betaseron, Copaxone, Gilenya, Rebif, and Tysabri) have not proven to be effective in the treatment of people with MOGAD, NMOSD or Recurrent TM and in some cases may cause more harm than good. Most often, people with Recurrent TM, MOGAD or NMOSD are considered for immune suppressant therapies. Which therapies a person is placed on is based entirely on the clinical judgment (experience) of the physician, combined with individual needs.
