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I picked up a book Brain on Fire at airport about a girl in her 20’s who all of sudden is acting very odd, like she has dementia, schizophrenia, psychosis, bipolar disorder…it turns out she had ovarian cancer that was cured previously and it led to a spike in her white blood cells and it took quite some time for Doctors to figure this out.  She was also having seizures.  Reading her actions reminded me of my Mom and while not the same scenario this author did the make the point of saying if her parents had not kept pressing doctors she could have ended up in mental illness facility or nursing home.  It made me think this could happen to others, and that is pretty scary as many don’t have a lot of money or great health care.  The author was at very good hospitals in New York and they could not figure this out for longest time.  It is scary to think some could be institutionalized that could actually be cured.  It made me sad too, I don’t think a lot of testing was done on my Mom but I really don’t know…I would suggest everyone keep very good notes of all lab work done with results in case a case like this could ever come up – especially with a younger person being diagnosed with dementia.

I was asked this question by a reader of my blog, and the honest answer is I don’t know.  She was diagnosed back in the summer of 2006 and it is 4 years later.  I have to say I believe she is doing better now that at first but I believe that to be because her medications have finally been figured out as to what works best for her.  She is able to talk and walk and is semi-independent.  The problem with me knowing where she stands is she has had probably 15 doctors since being diagnosed.  The original doctor who diagnosed her doesn’t go to her home, and since we are medicaid only she only sees the house doctors.  I wish she could have stayed with the same doctor as it would be interesting to see a medical evaluation from same person.  Most of the doctors who have seen her do not understand Pick’s disease and she is routinely misdiagnosed, which I blogged on in the past.  I don’t know if this helps at all but I wanted to share.

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