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What are the symptoms of schwannomatosis?

As schwannomatosis is a recently recognized disorder, the full spectrum of symptoms is not yet known. For some people, the first symptom of schwannomatosis is pain. This pain may be in any part of the body and may become very debilitating. Schwannomatosis may also cause numbness, tingling, or weakness due to nerve or spinal cord compression.

Other symptoms (depending on the location of the tumor) may include:

  • Difficulty with urinating or bowel dysfunction
  • Facial weakness
  • Headaches
  • Lumps or swollen areas where tumors form under the skin
  • Numbness
  • Vision changes
  • Weakness

Unlike NF2, people with schwannomatosis do not develop vestibular tumors and do not go deaf. They also do not typically develop any other kinds of tumors associated with neurofibromatosis (for example, meningiomas, ependymomas or astrocytomas) and do not have learning disabilities. The schwannomas that form as part of schwannomatosis are benign, with very rare exceptions.

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