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 New Dr. questioning diagnosis 
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Joined: Fri Mar 16, 2007 7:15 pm
Posts: 11
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I'm sorry, I am fairly new at this. I haven't personally spoken with my Mom's Neurologist. My mom stated that he told her he could see the Lewey Bodies, my father tells me that he is making the diagnosis based on where he see's damage (white areas?) in her brain from the MRI. I don't know all of the medical terminology and am sorry if I was misinformed. My dad states that the Neuro told him that because he is seeing damage in the back of the brain, he feels it is Lewy Body as opposed to alzheimers.
My mom is seeing someone who specializes in LBD and I know that she has had a number of opinions.
Sorry if I sounded stupid. I am learning as we go here and didn't mean to misquote anyone.
I have three young children and haven't had the opportunity to meet her doctor yet. I am planning on attending the next visit when the kids are back in school. I'll make sure to ask him again how he came to this diagnosis. My mom's symptoms certainly sound like LBD, but as I have learned from all of you, I guess we won't know until they can physically see her brain.


Fri Jul 20, 2007 10:12 am
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becembrie wrote:
I'm sorry, I am fairly new at this. .


Dear Karen, No apology is needed here, some of us have been at this a long time and want you or anyone well informed and wanted you to know if there is a Doctor out there seeing this then something is wrong, LBD is
has its own core features, this is the one reason it is so misunderstood by many including the medical professional, I am glad that you feel you have a Doctor for your Mother that is well versed in LBD it can make the world of difference, this is what the LBD forums are all about....Learning....

LBD features
strong psychotic symptoms (hallucinations)
extreme sensitivity to antipsychotic medications
day-to-day symptom variability.


Fri Jul 20, 2007 11:18 am

Joined: Fri Mar 16, 2007 7:15 pm
Posts: 11
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Thank you Irene. I have been trying to find information on LBD, but aside from this site, there isn't much out there. NONE of the doctors or medical people I have spoken with have even heard of it. I found it hard to believe, but my internist and family doctor both looked perlexed when I told them the name of the disease. Of course everyone knows what Alzheimers and Parkisons disease are, but nobody I have ever spoken to knew anything about this.
I appreciate your information.
Thanks
Karen


Fri Jul 20, 2007 1:07 pm
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Dear Karen,
You are not alone with this happening with many people and that includes medical personal, when my husband went into hospice they didn't know how to deal with him I had to come home and copy from the internet yes everyone knows AD and PD but this is not either sadly.I used to describe it that way also and thats how things were so messed up with hospice, he was under their care as a PD patient.
Stick around here and get educated its your best defense and have you been to the LBDA website yet? If not click the link below my signature.There are also online support groups for family members of LBD patients.. :)


Fri Jul 20, 2007 1:51 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Parkinson's Disease Dementia is a more-commonly used term in some circles. The international consensus is actually Dementia with Lewy Bodies.

Again, though, the white area changes are not generally caused by Lewy bodies; those spots are caused by vascular changes in most cases - loss of blood to the brain during a stroke or transient ischemic attack.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Jul 21, 2007 9:44 pm
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