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 My Wifes condition. 
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Joined: Thu Apr 14, 2011 1:18 pm
Posts: 5
Post My Wifes condition.
I don't even really know where to start with this.

We have been fighting a mystery for a couple years now and my own research lead me here.(both the site and the possible diagnosis of LBD

I prepared this document based on information from this site and the Mayo clinic site and presented it to my doctor after reading it he is reluctant to offer so much as a possible diagnosis so I thought to get more information by posting it here


I have been asked why I believe Wendy(my Wife) may have Lewy Body Dementia. This is my research findings.

Lewy body dementia symptoms and diagnostic criteria
The latest clinical diagnostic criteria for dementia with Lewy bodies (DLB) categorizes symptoms into three types, listed below. A diagnosis of Parkinson’s' disease dementia (PDD) requires a well established diagnosis of Parkinson's disease that later progresses into dementia, along with very similar features to DLB. A rather arbitrary time cutoff was established to differentiate between DLB and PDD. People whose dementia occurs before or within 1 year of Parkinson's symptoms are diagnosed with DLB. People who have an existing diagnosis of Parkinson's for more than a year and later develop dementia are diagnosed with PDD.

Central feature
Progressive dementia - deficits in attention and executive function are typical. Prominent memory impairment may not be evident in the early stages.
  • We have watched Wendy’s Condition progressively get worse over the past few years. With episodes increasing in both frequency and severity.


Core features:
  • Fluctuating cognition with pronounced variations in attention and alertness.
    • Wendy’s condition has always been described as “episodic” but as the “episode’s became more frequent they defiantly reflect a fluctuation more so than an episode.

  • Recurrent complex visual hallucinations, typically well formed and detailed.
    • There have been a couple times when we believe she may have had hallucinations. These have taken the form of me returning early from work, walking around the house and completely ignoring her. As Well as Auditory Hallucinations.
  • Spontaneous features of parkinsonism.
    • She has had “tremors” and Shakes for a long time now, as well as gait disturbances, including shuffling and failure of gait. However with the recent addition of Namenda to her daily medicines these have subsided.
Suggestive features:
  • REM sleep behavior disorder (RBD), which can appear years before the onset of dementia and parkinsonism.
    • Wendy has times where she either mumbles or fully talks in her sleep.
  • Severe sensitivity to neuroleptics occurs in up to 50% of LBD patients who take them.
    • These were not considered until after the information of LBD was presented and with the possibility of sensitivity it was decided to avoid them at this time.
  • Low dopamine transporter uptake in the brain's basal ganglia as seen on SPECT and PET imaging scans. (These scans are not yet available outside of research settings.)
    • While this test cannot/has not been preformed. We have discovered that high levels of Niacin (1000mg+) has beneficial effects. Niacin has been known to increase Dopamine levels, as it is used in the body’s production of dopamine.
Supportive features:
  • Repeated falls and syncope (fainting).
    • Balance issues and feeling faint have been present from the first signs of problems
  • Transient, unexplained loss of consciousness.
    • Wendy has complained often of feeling like passing out and on more than one occasion fallen to the floor and noted that it was like she passed out.
  • Autonomic dysfunction.
    • Wendy often suffers from several of the forms of presentation of dysautonomia, including
    • Constipation
    • Headache/migraine
    • Neuropathic pain
    • Dizziness
    • Anxiety
    • Numbness or tingling sensations
    • Noise sensitivity
    • Acid Reflux/Heartburn
    • Excessive fatigue
    • Excessive thirst
    • Depression
  • Hallucinations of other modalities.
    • See Above

  • Visuospatial abnormalities.
    • Wendy has complained of Dyslexic type vision issues for the majority of her life. As well as occasional troubles with depth perception and blurred vision.

  • Other psychiatric disturbances.
    • Wendy also suffers from
    • Mild bouts with Aphasia
    • Difficulty interpreting the intent of verbal communication. (this is similar to paranoia in that she tends to easily react as tho the
    • other person has intentions of causing trouble or harm.
    • Agoraphobic like times of fearfulness of leaving the house.
    • Her problem solving and decision making skills have degraded to the point of inability to choose food when faced with a minimum of choices. And most recently the inability to call 911 during a crisis.
    • At times she suffers from severe intolerance to most all stimuli including verbal, physical, and visual. Also crowds and commotion are normally intolerable.

Other Indicators
  • Thyroid was checked and found normal.
  • Vitamin B levels checked and found normal.
  • MRI showed no signs of Vascular Dementia.
  • EEG showed no signs of seizures or epileptic activity.
  • Tests to determine Alzheimer’s came back negative.


Currently, a conclusive diagnosis of LBD can be obtained only from a postmortem autopsy.


A clinical diagnosis of LBD can be probable or possible based on different symptom combinations.

A probable LBD diagnosis requires either:

Dementia plus two or more core features, or
Dementia plus one core feature and one or more suggestive features.
A possible LBD diagnosis requires:

Dementia plus one core feature, or
Dementia plus one or more suggestive features.


My Wife is 35


Sat Apr 16, 2011 2:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Wifes condition.
To be brief, if I were you, considering your wife's age, I would find the best team of neurologists available and get her thoroughly examined. There could be other underlying neurochemical issues that could be causing her symptoms. It would be a shame if it were something reversible and it was missed. Even if it turns out to be a neurodegenerative brain disorder like LBD, early diagnosis will get her the right treatment and help to avoid the wrong ones. I'll be praying for the both of you! God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Apr 16, 2011 3:27 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: My Wifes condition.
I have no medical background but I agree with Pat that you should find the best neurologists you can for Wendy.

Also, if you have not already done so, I suggest you look into having financial and health care powers of attorney prepared for Wendy, and possibly other estate planning documents, assuming she is still competent to sign them. An estate planning attorney can give you advice in this area.

I'm glad you found the forum because there is a lot of information here, though of course an expert diagnosis of Wendy's condition is the place to start.

Best of luck,

Julianne


Sat Apr 16, 2011 4:22 pm
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Joined: Thu Apr 14, 2011 1:18 pm
Posts: 5
Post Re: My Wifes condition.
We have been to 2 neurologists and 4 docs 1 psychologist and 1 psychiatrist and none of them could come up with anything or even at least disprove LBD on anything other than the basis of age. Currently she is being treated in an inpatient care facility for mental disorders and they are bringing in another neurologist.


Sat Apr 16, 2011 4:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My Wifes condition.
Dans326,

You might report where you live as perhaps someone here as a recommendation of a neurologist to take your wife to see.

Just a few comments on your detailed match-up of symptoms and the LBD diagnostic criteria...

1. Having "maybe" hallucinations a couple of times doesn't qualify as recurrent. In the example you gave, I'm unclear if this is a hallucination or delusion.

2. Curious that Namenda has resolved the tremor! Is the tremor a Parkinson's rest tremor? Does she have other parkinsonism symptoms (rigidity, bradykinesia).

3. RBD isn't just mumbling or talking in one's sleep.

4. Why were you considering neuroleptics?

5. Niacin increases dopamine levels?? Were that established medical wisdom, wouldn't everyone with Parkinson's be on niacin?

6. Feeling faint and syncope are different, as you probably know. Does your wife have OH (orthostatic hypotension) that would be causing her to feel dizzy upon standing up?

I'm a layperson. This doesn't sound like LBD to me. Has a neuropsychologist characterized the dementia symptoms? Has she been evaluated for Frontotemporal Dementia? Does she have a family history of dementia or a movement disorder?

Thanks for mentioning brain donation. I hope you'll discuss this with your medical team...once you've found a good medical team.

Good luck,
Robin


Sat Apr 16, 2011 5:07 pm
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Joined: Thu Apr 14, 2011 1:18 pm
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Post Re: My Wifes condition.
Robin First I wish to thank you for your input as you are the first person to actually pick my findings apart and make comments or arguments against parts of it.

1. Having "maybe" hallucinations a couple of times doesn't qualify as recurrent. In the example you gave, I'm unclear if this is a hallucination or delusion.


I completely agree with this however she does experience frequent times of hearing things such as someone in another room calling to her. but even this I do not feel is representative of the hallucinations described in the various information I have found.

2. Curious that Namenda has resolved the tremor! Is the tremor a Parkinson's rest tremor? Does she have other parkinsonism symptoms (rigidity, bradykinesia).

Her parkinsonium symptoms include rest tremors in her right hand and less frequently in her left. she experiences frequent cramping of muscles which our doctor has commented may be an early indicator of rigidity. as well as the shuffling gait and frequent times of inability to lift her feet from the floor all of wich were reduced by the introduction of Namenda but none were stopped completely

3. RBD isn't just mumbling or talking in one's sleep.

again I agree that the description of RBD commonly associated with LBD is normally referencing full ranges of movement during rem sleep. but as RBD does encompass sleep talking/mumbling I felt it appropriate to include this information

4. Why were you considering neuroleptics?

The Doctors were as of yet unable to figure out any answers and were willing to try anything so anti-psychotics were considered not for any specific reason but more of a try it and see if it helps situation.

5. Niacin increases dopamine levels?? Were that established medical wisdom, wouldn't everyone with Parkinson's be on niacin?

We noted an improvement in her condition after drinking the low-carb monster energy drink. but not others so we began investigating the individual ingredients until we had it narrowed down to the niacin and at first we did not know why it was helping her. but since it did we put her on 1000mg per day and contenued researching it to see if we could find a reason why it was helping.

after research we found this bit of information
The amino acid tyrosine, plus several vitamins, such as B, C and E, as well as iron, folic acid and niacin offer an additional boost to trigger dopamine release.
Read more: http://www.livestrong.com/article/67155-foods-stimulate-dopamine/#ixzz1Jj7E8a1d

Vitamin B-3, or niacin, may also help boost endorphin levels in the brain. Specifically, vitamin B-3 is used in the production of dopamine, a neurotransmitter that modulates a number of processes in the brain, including mood regulation. The University of Maryland Medical Center explains that NADH, a biologically active form of niacin, can interact with chemicals in the brain and increase dopamine production, increasing overall dopamine signalling within the brain. As a result, niacin deficiencies may limit the brain's ability to produce dopamine, and eating foods rich in vitamin B-3, such as beets, fish and peanuts, may help promote normal dopamine functioning in your brain.

Read more: http://www.livestrong.com/article/348975-vitamins-that-increase-endorphins/#ixzz1Jj869tu9

alzheimer's disease - NADH may increase dopamine production, Niacin is a precursor to NAD+/NADH and NADP+/NADPH

The biggest problem of Niacin is the flushing (bad sunburn that lasts for 30 or so minutes) so we have to be careful with how we dose it to her.


6. Feeling faint and syncope are different, as you probably know. Does your wife have OH (orthostatic hypotension) that would be causing her to feel dizzy upon standing up?

Again her symptoms are among the basic forms of the described symptom but existant to a degree worth noting. As far as her having OH no she does not but I have something that is often described as OH but in my case it is due to shear size but often I get dizzy or black out after standing too quickly after resting. and as near as I can tell her symptoms are nothing like that.


Sat Apr 16, 2011 6:22 pm
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Post Re: My Wifes condition.
Hello Dan,
I hope and pray that your wife has some kind of reversible condition.....I agree with the others about finding the best neurologist you can, especially one that has specialty in movement disorders and/or cognitive/dementia issues. It took me over 10 yrs to get a dx of LBD by a cognitive/dementia neurologist at a teaching hospital....and I was 35 when my symptoms began and the first ones were cognitive (that only I could notice at the time)....I am 46 now....Whatever you do, don't give up - don't settle for a diagnosis that you feel is wrong - get 2nd and third opinions....If I had given up in 2009 with a dx of chronic fatigue syndrome (for which there are no treatments), I would not now be on aricept which is helping my cognition tremendously (in fact I almost feel like a miracle has occurred) - and now that I know what I am dealing with, I can address it head on with whatever means available. Before I just felt helpless to help myself - as did my husband....I also have family history in that my Father now has PDD....I am glad to hear the Namenda helped your wife as I am to start that next month....Whatever her diagnosis turns out to be, I wish you the very best and please try not to give up - it's a difficult search for answers and it sounds like you have been researching....you must love her very much.....Don't give up!
You both will be in my thoughts and prayers...
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Apr 16, 2011 7:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My Wifes condition.
Dan - your wife is lucky to have such a great advocate for her health. It sounds like you are observing, documenting and communicating important info. to the drs. that will, hopefully, result in her getting help she badly needs. I wish you the best and glad you found this supportive community. Keep us posted on how things are going. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Apr 16, 2011 7:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: My Wifes condition.
Dans326,
What a tough spot you are both in! I am so sorry that you are dealing with this huge challenge. It sounds like you are a very caring and resourceful husband and will be a super advocate throughout this journey you didn't sign up for.

I am glad that the risks of using neuroleptics have been recognized for Wendy. Having a specific diagnosis would be very useful, but until then I hope that treatments for the symptoms improve your lives.

Diagnostic accuracy is low for LBD and many of these kinds of disease. Based on that, probably a signigicant number of caregivers on this board are not really dealing with LBD. But we are all dealing with enough similar symptoms that it makes sharing and our sense of community very worthwhile. Please feel free to join us. I'm sure you will find support here, and we will be interested in following your quest for diagnosis and treatment.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Apr 16, 2011 8:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: My Wifes condition.
Welcome Dan,
Sorry for the need for such a place for you and your wife at such an early age! I will agree getting a Physician who treats and can diagnosis the illness, I certainly don't feel qualified enough to pick apart your list and I am sure it means a great deal to your wife that you show you interest in helping her !

_________________
Irene Selak


Sat Apr 16, 2011 8:42 pm
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Location: SF Bay Area (Northern CA)
Post Re: My Wifes condition.
Dans326,

You might buy (borrow) a blood pressure cuff or buy one of those automatic devices, and check your wife's BP when lying down, upon sitting up, and upon standing up. I suggest this because there are so many forms of dysautonomia out there that I wonder if this is what's going on with your wife.

Also, have you considered NPH? I believe this usually is seen on an MRI, which you said your wife has had.

Unfortunately there are so many disorders that cannot be diagnosed from neuroimaging! It's amazing how little we know.

Thanks for the info on niacin. The key in what you said is that niacin offers "an additional boost to trigger dopamine release." You have to have dopamine in the brain to begin with for it to be released.

Robin


Sat Apr 16, 2011 10:59 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: My Wifes condition.
Dan,
your wife is very fortunate that you are in the hunt for answers and that you both understand you are looking at something that needs addressing…

I just found my answer…unfortunately it is Lewy…I had been trying to get a doctor for years to say I had MS…..in my research, a lot of shared symptoms in neuro stuff…(symptoms that appear to be the same across diseases with slight differences….are real tricky)

the way I got to answer…do as you are doing now…document everything…every sypmtom….everytime….create timlines….relaspe graphs….there are websites like patientslikeme and others that facilitate that by letting you track symptoms, treatments, etc…against a timeline…giving you a timeline picture…..

now…all of that is nice…

finding the doctor that will be the right doctor….and getting him to listen on the day you are there…seems to be really hard part…

my advice…don't give up

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Apr 16, 2011 11:15 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: My Wifes condition.
Dans326 wrote:
The biggest problem of Niacin is the flushing (bad sunburn that lasts for 30 or so minutes) so we have to be careful with how we dose it to her.

I speak from experience when I say the Niacin Flush is annoying. There may also be another, more hidden side effect. From the U of Maryland:
However, niacin can also raise blood sugar levels, resulting in hyperglycemia, which is particularly dangerous for someone with diabetes. For that reason, anyone with diabetes should take niacin only when directed to do so by their doctor, and should be carefully monitored for hyperglycemia. http://www.umm.edu/altmed/articles/vitamin-b3-000335.htm
Since people can have diabetes or a tendency to diabetes without knowing it, this is worth knowing. When I was finally diagnosed with diabetes the doctors exclaimed over my med history -- "You were taking how much niacin for how long?!" I was taking it under a doctor's orders but she was not monitoring me for diabetes and she apparently also was not keeping up with the latest research that suggested a lower upper limit for women. (Do I need to mention that she is no longer my PCP?)

I'm really glad the Niacin is helping Wendy. I'd just suggest periodic checks for blood sugar levels if that isn't already included when other routine blood work is done, or at least discussing it with Wendy's medical team.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 17, 2011 1:10 am
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Post Re: My Wifes condition.
Thank you all for the kind words and encouragement

JeanneG there is another side effect of Niacin. In large enough quantities aside from the flushing it can cause symptoms that mimic MS

Robin ever since my first breakthrough in my investigation into why Niacin was helping her. I have wondered how Niacin would effect other people with Parkinson's or other dopamine related conditions. Not that I would ever ask anyone to experiment. but it would be interesting to see results.

Irene My wife is currently in an inpatient facility where they are trying to figure out what is going on and at least attempt to sort out her medication to get her off of the daily roller coaster shes on of ups and downs between every dose of her meds

Tonya forgive me for asking you to restate this but did you say in your post that you developed LBD at age 35? I ask for direct clairifiaction because our doctors have all said that they did not know of people less than 60 with it. even after I pointed out information on research of (I beleive) a 12 year old girl in Spain with it. (I cannot locate the article right now to cite)


Sun Apr 17, 2011 2:05 am
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Post Re: My Wifes condition.
Hello Dan,

I have had symptoms since I was 35...yes (they were only noticeable to me in the beginning)....My LBD diagnosis is new as of February 2011....But I finally got a neurologist who specialized in cognitive/dementia issues and movement disorders....Like Craig, they were looking at MS for me for quite a while because of my age and I had "espisodes" which I now think were the fluctuations of this illness or related to infections or other things that can set LBD off (or other neurodegenerative disorders)...I also have autoimmune thyroid disease which I think complicated the entire picture as so many of my symptoms were blamed on my thyroid for a long time even after treatment with medication....

The pamphlet available on this website for the newly diagnosed, I think says that the most common ages are greater than 60 yrs old, but can be any age...hope that is correct - my memory is a little iffy especially at these hours of the night with my insomnia...From what I have read and learned on this and a few other sites, I could also have other dementias, like possibly bvFTD because I have significant brain atrophy and did on an MRI in 2006 that was missed (if only I could have started medication then)....I also have many small white spots in the white matter of the brain....

My Father who has PD and now PDD had a mother who had "schizophrenia" beginning in her late 30s...I am sure am suspicious of this now...that was back in the 1930-40s when she was diagnosed in a rural area and there were really no medicines or imaging....She lived to be 72 so I wonder if she might have had frontal lobe dementia....in any event, the other plus with my new doctor is that she believes in genetics and I do think these things have genetic connections that are not fully understood....I do believe my age had a lot to do with why it took so long to arrive at a dx that fits....

I wish the best for you and your wife and as the others said she is very lucky to have you as her advocate! I am very lucky too to have a wonderful supportive husband of 20 yrs....

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun Apr 17, 2011 4:55 am
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