Overwhelmed, in a panic, or don’t know where to start?
We know firsthand how difficult being diagnosed with a rare, immune-mediated demyelinating disorder of the central nervous system (brain, spinal cord, and optic nerve) can be. We know how frightening and isolating it be can when given a diagnosis of a rare neuroimmune disorder — acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, or transverse myelitis.
If you haven’t done so already, please take a few minutes to become a member of the Siegel Rare Neuroimmune Association. There is no cost to do so and we will keep you informed of the latest information on treatments, research and management of rare neuroimmune disorders as well as our programs.
Being newly diagnosed with a rare neuroimmune disorder is hard, but please know that we are here for you. You are not alone. We are here to help. We are here to guide you through it all and to support you.
It is extremely important to begin treatments as soon as possible after a rare neuroimmune diagnosis. Treatment protocols depend on the diagnosis. Treatment for Acute Disseminated Encephalomyelitis, Acute Flaccid Myelitis, MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis and Transverse Myelitis 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.
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. There are very few clinical centers with physicians who specialize in TM or NMOSD (e.g., University of Texas Southwestern, Johns Hopkins, 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.
For detailed information, please visit the acute treatment sections for Acute Disseminated Encephalomyelitis, Acute Flaccid Myelitis, MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis, and Transverse Myelitis.