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 Have many suspicions about my dear mother 
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Joined: Tue May 16, 2017 9:44 am
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Post Have many suspicions about my dear mother
Hello, not sure if my mother has Lewy Body Dementia or not, but she has been experiencing symptoms for sometime now. She has the diagnosis of sarcoidosis, atrial fib, and copd.
At first we thought she was having one UTI after another, but even after going through a course of antibiotics she is still having hallucinations and sleep disturbances. Her primary doctor is clueless, but my sister who has been a nurse for over 40 years is in agreement with me. Any help would be appreciated. Thank you all and God Bless


Tue May 16, 2017 1:28 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Have many suspicions about my dear mother
apea92 wrote:
Hello, not sure if my mother has Lewy Body Dementia or not, but she has been experiencing symptoms for sometime now. She has the diagnosis of sarcoidosis, atrial fib, and copd.
At first we thought she was having one UTI after another, but even after going through a course of antibiotics she is still having hallucinations and sleep disturbances. Her primary doctor is clueless, but my sister who has been a nurse for over 40 years is in agreement with me. Any help would be appreciated. Thank you all and God Bless


Greetings Apea?;

I am not a doctor nor have a stayed at a Holiday Inn Express recently but I am a patient. I hope others can chime in here. I don't have any of the physical symptoms and as far as I know, those are not normally associated with LBD. That said, those maladies are common in older folks as is dementia, be it LBD or something else and often the dementia and the more physiological symptoms can seem related. More like they are sharing foxholes. Now the hallucinations, sleep disturbances are signs of dementia or more to the point, targeted brain damage due to the protein deposits. Things like COPD are many years in the making and have nothing to do with the brain. Leaving all the other stuff aside, getting a REAL neuro-psych test will sort out how much is possible brain damage and how much is something else. From there the steps that made a difference for me was the PET scan with the radio-active injection. I know there is a fancier name for this but thats what I recalled as it showed the damaged portions of the brain (mine hit 5 spots). Past that I don't know what to suggest simply because there are no tests for LBD, just tests for everything else which is how the diagnosis goes. Neuro-psych says something is wrong, then you get to test for everything from meningitis to the clap to rule out the other 4000 unlikely possibilities. After all that (which can take years if you have crappy insurance) you get to the PET scan and the rest is history. Only for-sure test for LBD is the autopsy.

But get your neurologist pointed at the neuro-psych and don't let that crappy pen and paper 5-minute job they try to give you in-office suffice. Particularly for LBD that is a wash-out. You want/need the one that goes on for 4 hours to two days. Obviously they test better and more thoroughly but (and this part is key so write it down) because it takes that kind of time, it stands a better chance of defeating the LBD cycles and that can make all the difference. One thing that makes LBD different (I am told) is that the cognitive abilities of the patient can vary wildly throughout the day, which means when your mom is in front of the doc for the 20 minutes he sees her, she could be great but by the time you get her home, the fog could be setting in and suddenly she is "gone". I know this because thats my reality. So when you get those quickie tests, you better home she is at her worst in that 5 minutes or the test will find very little and once you get one, getting another one scheduled in less than 6 months usually falls into the "good luck buddy" category.

The longer test will show these cycles because regardless of when they happen, they are frequent enough to know they will for sure happen for me in any one 6-hour period or less and so I know I will be in "Homer Simpson mode" for at least part of it. Otherwise its like testing your drinking water by testing the water in your pool, pretty damned pointless.


Fri May 19, 2017 12:33 pm
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