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 two questions from a new member 
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Joined: Sat Mar 02, 2013 10:45 am
Posts: 1
Post two questions from a new member
Hi to everyone.

I'm new here and have many questions I could ask (and probably will soon), but I'd like to ask two questions in particular first. I've not been diagnosed with LBD but have a fairly strong suspicion that I may have it. What re-inforces this thought is that my brother has Parkinson's and seems to be displaying signs of LBD three years on, but again, has not been diagnosed.

All my doctors and neurologists (I've seen three now), tell me I am not showing signs of LBD even though I can clearly see that many of my symptoms are the same.

My first question is this. This week I had a neuropsychological test done. The exam lasted about an hour and involved me being tested for memory, concentration, co-ordination, timed problem-solving etc. Although I sat through the test with my usual brain fog and awful vision problems, I pretty-well sailed through it and was told that it showed that my brain is functioning perfectly normally. I think I had an almost 100% score. I talked to the doctor who put me through the test about LBD, and he told me that there's no sign that I have LBD and that I'm not, in his brief meeting with me, showing the usual signs. I know he could easily be wrong but I wonder . . . has anyone on the forum come across such a scenario with this test and is it in any way significant?

The other thing I wanted to ask is if anyone has considered, or dismissed, or even investigated the possibility that LBD may be sometimes be mis-diagnosed, and may instead be a vestibular disorder. I'm sure that a definitive diagnosis of LBD may be difficult to argue with, but in the early stages in particular, I could well imagine a vestibular disorder being a "potential" cause because the symptoms are very, very similar to LBD. In fact, almost all of my symptoms are those of a vestibular disorder. But, as I've mentioned, they are those of LBD too. Both illnesses are also not well understood by most doctors and/or neurologists and need specialists to investigate and diagnose them. I've placed a link below that explains the symptoms of vestibular disorders (and much more) so that anyone not aware of the illness may take a look and compare. However, I know that LBD (when it is LBD) is difficult to mistake. But I'd just like to know if anyone has had the same thoughts and found reasons to dismiss a vestibular disorder. The link is below. ... r/symptoms

As I've said, I could talk of my worsening medical history in detail but just wanted to ask the two questions above first as they're my most important concerns at the moment. Thanks for any help and advice.


Wed Mar 20, 2013 7:54 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: two questions from a new member
This is just my opinion, for what it's worth, but I think perhaps because your brother has this disease you are concerned about your having it, as well. If you have no issues with problem-solving, that's a good sign. My husband took a battery of tests, told me he 'passed with flying colors' but the doctor proceeded to prescribe Exelon, a dementia medication. When he found out what it was for, he said he didn't need it and didn't take it for two more years. He was in strong denial. If your neurologist said you show no signs of dementia, why not believe him? You can try to make certain your brother is receiving the medical care he needs.

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.

Wed Mar 20, 2013 11:26 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: two questions from a new member
Let me welcome you to the LBDA forums, as far as your question I agree with Pat who has answerd you , trust the doctor and his opinion. If for some reason you do have it it will show itself at some point but you can't treat what isn't there yet, its like a person taking High Blood Pressure meds but doesn't have high Blood Pressure ! We are all here for the many questions you have !

Good Luck !

Irene Selak

Wed Mar 20, 2013 3:26 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: two questions from a new member
While LBD can have all of those symptoms, the ones that were missing are the delusions and hallucinations. Medications can have a great impact on the person with Lewy Body, they can even kill someone, it is called Neuroleptic Malignant Syndrome. The Delusions and Hallucinations get worse and their physical ability deteriorates, sometimes it can't be reversed. Even a cold medicine can affect them in a very serious way. Lewy Body is usually only a determination by a Physician, autopsy of the brain is the only way to know for sure.

Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.

Thu Mar 21, 2013 9:13 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: two questions from a new member
Nearly every time I experience a "senior moment" I worry (at least a little) whether I have or will develop LBD like my dad. If I were to take a test like you did recently, the results would probably be exemplary. I am trying to not think about this stuff because it is so scary and maybe my little slips of memory, where I put the car keys or whatever are truly nothing.

Perhaps you can find a way to trust your dr.'s opinion and focus on keeping yourself happy and healthy for now. If you actually DID have an LBD dx now, would your dr. be able to give you meds or other things that could help you? How much are your symptoms bothering you? Should you go elsewhere and seek another dr.'s opinion? All the best, 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.

Mon Mar 25, 2013 7:53 pm

Joined: Sun Feb 24, 2013 11:33 am
Posts: 5
Post Re: two questions from a new member
Hello, my husband's latest diagnosis is LBD. His symptoms came on in a drastic way in Dec of 2009. The testing you had-if it was just an hour-was not complete. He goes through a 4-5 hour testing yearly to determine changes in numerous catagories. He sees a neuropsychologist with a Phd for this level of testing. Hope this helps
Mary Ellen

Sun Mar 31, 2013 10:02 am

Joined: Sun Mar 24, 2013 8:04 pm
Posts: 24
Post Re: two questions from a new member
Hi, my husband kept saying he didn't feel right for 10 years. He saw 4 nuero docs over the years. They blamed his diabetis, for most of it but also told him he was fine. He was treated like a whiner. His sleep apnea doc picked up on it first. He started hallucinations and getting a little lost when driving, bingo new nuero got it right away. You may not have Lewy but you know how you feel. My husband said for years he had the disease yet to be named, well it had a name he just didn't have a dx. He is 58 but showed many signs for years. Wish you well

Sat Apr 20, 2013 12:26 pm

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: two questions from a new member
Always get a second opinion if you have any doubts. Not saying you don't have a good physician, it is just a good idea if you are not comfortable. Our neurologist welcomed us going to a second and even a third source. We started with a plain Parkinson's diagnosis, but when things were accelerating at a rate greater than we expected, he openly agreed to us checking with others. He stated that it is good to explore all of your options in case there is something out that he didn't know about yet. He remained Ted's home neurologist to the end. The other two places we went were Chapel Hill and Mayo Clinic in Jacksonville, Fl. Both extremely reputable and outstanding institutions. Together, all three gave us excellent care and we shared all information with each when we saw them (went back to Chapel Hill for their movement disorders clinic, returned yearly/couple times a year to Mayo in Jacksonville). I am awaiting results of brain autopsy to know for sure, but Ted's diagnosis was LBD with Parkinson's.

Sat Apr 20, 2013 9:34 pm
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