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A member asked:
Dx: ckd3 w/ r kidney 11x8mm angiomyolipoma; steatosis w/ r lobe 10x9 mm hemangioma; less than 5 (white-like) spots on skin. inconsistent expensive $'s given for genetic tsc1&2 test i can't afford. try to pursue for rare tuberous sclerosis complex?
A doctor has provided 1 answer
3 or more hypomelanotic macules (white spots with diameter above 5 mm) put you at as possible case of TSC. However, one renal angiomyolipoma and liver hemangioma are not uncommon at your age. If you do not have affected children, it is uncommon to have this disease diagnosed at your current age. If you do not have any other symptoms and the genetic test is too expensive, no need to be done.
Answered 1/20/2022
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