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My husband‘s unexpectedly positive response to a switch in his Parkinson’s medication made a friend who is an RN specializing in neurologyquestion whether he had been misdiagnosed with Parkinson’s when what he actually had was Normal Pressure Hydrocephaly. He’s currently in hospice, so pursuing tests to discover whether he has NPH would require taking him out of hospice, getting him under the care of a primary doctor, being referred to a neurologist, and having an MRI done and possibly cerebral fluid tested. I suspect this would be a 4 to 6 month process. If the test for NPH was positive, treatment would involve the implantation of a shunt to remove fluid from his brain with no guarantee that his physical mobility would be significantly improved. I’d be interested in hearing from anyone who has experienced this, if they pursued the NPH diagnosis and treatment, and whether it was worth a time, effort and expense.

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Very interesting question. I think my husband has normal pressure ensephalitis and its not clear but his symptoms fit alot of neurological issues. He may not fit in one box. I am working diligently to get testing done but he has an HMO.
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Reply to Tanya61
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I just read about this and it seems it is taken for Parkinsons or ALZ. I would wonder though, if its too late to reverse anything. Then you say your looking at up to 6 months before something can actually be done? How old is your husband? His age would have a lot to do with how things turn out anyway.
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Reply to JoAnn29
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How old is your husband?

The singer Billy Joel went through this (misdiagnosis). Apparently he's doing much better now but I'm not sure how ill he was when it was corrected. If it were me, I'd want to get tested. I know this impacts your life, but keep researching as you've been doing. I wish you much wisdom and peace in your heart whatever you decide to do.
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Reply to Geaton777
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This is a treatable condition and one of the reasons people are advised to seek a real diagnosis rather than just going by appearances. Seeking a diagnosis now depends on whether he's only on hospice because the brain swelling is killing him or he has other conditions.
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Reply to cwillie
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