Discussions By Condition: I cannot get a diagnosis.

Possible Usher Syndrome - Loss of peripheal vision

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • April 15, 2008
  • 06:38 PM

My mother just informed me that she may be diagnosed with Ushers Syndrome. My mother is 62 years old and lost her hearing at age 2 from an ear infection, or at least they think that is what caused it (60 years ago remember). Anyway, she has always had poor balance, difficulty walking down unstable ground, slanted grouns that kind of thing. They always believed that was probably just from her equilibrium being affected from the deafness. She has been seeing an eye Dr for the last year. I guess she told him that my sister and I were always complaining that she has like no peripheal vision at all, which I cant even remember her even having any. I am 32 years old, she hasnt had any peripheal vision since I can remember! Anyway, the Dr. automatically told her Ushers Syndrome. After all my research it seems that Ushers is usually diagnosed at a very young age and the retinitis pigmentos will usuall cause blindness in early adulthood. Yes, she wears some pretty strong perscription glasses but she's 62 years old and has been waering glasses for at least 30 years.She does not suffer from night blindess, never has. She just has bad balance so she doesnt like to walk in the dark. Please help, I am trying to figure out if it is possible or a misdiagnosis between a Dr that does not know her full medical history and a deaf patient that cant tell him what her full medical history is. Her Dr is in KY and I live in IL, they wont talk to me due to the hepa law. Please help!!!

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  • You need to intervene on behalf of your mom, in my opinion, especially since there is a communication barrier. Under HIPAA, your mom can give her consent for you to talk with her doctors. She can do this in writing or by saying to the doctor "My daughter/son so-and-so has my permission to talk with you about my medical health." So I would talk to your mom about her doing this. Meanwhile, for your own information try here: http://www.nidcd.nih.gov/health/hearing/usher.asp
    aquila 1263 Replies Flag this Response
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