Answer Summary

Members shared their experiences with balance issues and amyloidosis, with many describing symptoms that include stumbling, falls, orthostatic... Read more

Members shared their experiences with balance issues and amyloidosis, with many describing symptoms that include stumbling, falls, orthostatic hypotension, and the need for assistive devices like canes or rollators, with some attributing the problems to inner ear nerve damage, peripheral neuropathy, or vestibular dysfunction. Several members offered practical strategies that have helped, including vestibular physical therapy (which one member credited with allowing them to walk without a cane most of the time), chair yoga, Tai Chi classes, daily walking routines, compression socks for neuropathy pain, and medications like hydrocortisone for orthostatic hypotension and Meclizine for vertigo. A recurring theme was the systemic nature of amyloidosis affecting multiple body systems simultaneously, including the nervous system, inner ear, and muscles, alongside frustration that many doctors dismiss balance issues as separate problems rather than recognizing them as connected to the disease.