I am 69 years old and have been diagnosed with a nerve condition called spastic paraplegia 4 (SPG4). I am looking for information about the disorder and am particularly interested in help with pain management. Any information that you can provide would be helpful.
According to the Spastic Paraplegia Foundation, located in Freemont, California, your diagnosis falls under a constellation of rare, inherited neurological disorders known as hereditary spastic paraplegia (HSP). Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. Researchers estimate that some 30 different types of HSP exist, including your specific diagnosis; the genetic causes are known for 11. The condition is characterized by insidiously progressive lower extremity weakness and spasticity. HSP is classified as “uncomplicated” or “pure” if neurological impairment is limited to the lower body. Complicated or complex HSP is diagnosed if other systems are involved or if other neurological conditions are present, including pain. The hallmark of the HSP syndrome is progressive difficulty walking due to increasingly weak and stiff muscles. It is diagnosed through careful clinical examination and an observation period to see if other symptoms develop that would indicate another condition. Currently, no treatments are available to prevent, stop, or reverse HSP. Treatment is focused on symptom relief, including medication to reduce spasticity and pain, physical therapy and exercise to help maintain flexibility and range of motion, assistive devices, and communication aids. The Spastic Paraplegia Foundation has an excellent website and provides multiple resources. Visit https://sp-foundation.org for more information.
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