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 Diagnosis? 
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Joined: Wed May 12, 2010 10:32 am
Posts: 4
Location: North Carolina
Post Diagnosis?
After reading several posts, I am realizing we should probably take our LO to a neurologist for a definite diagnosis. Granny is currently being seen by only a primary care physician (PCP) and he gave the LBD diagnosis, which he gave because of her clear and detailed hallucinations of children in her house at night (and playing hide and go seek with flashlights) and slight forgetfulness. Is this the route we should go? See a neurologist? Our PCP hasn't mentioned anything about going to a neurologist but has prescribed meds that seem to be helping. Who treats your LO's? Neuro or PCP?

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Jennifer


Wed May 12, 2010 2:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Jennifer,

As you may know, a confirmed diagnosis is only possible upon brain autopsy, which is something I hope you'll encourage your mother to consider for her mother. (The brain must be removed within a few hours of death.)

I'm impressed that a PCP would even know about LBD. Have you read over the diagnostic criteria on lbda.org? Probably a neurologist who is a dementia specialist or a geriatric psychiatrist would be best capable of diagnosing LBD. There are several here who live in NC so perhaps if you can say what city you live in (or what major city you live near), someone here can suggest an LBD-savvy MD.

Robin


Wed May 12, 2010 3:21 pm
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Joined: Wed May 12, 2010 10:32 am
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Location: North Carolina
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Thanks for your reply! We are near Charlotte, NC. I am attending a seminar on LBD tomorrow by a Dr. Reza Bolouri who practices in Charlotte. I want to get a feel for this doc, but I have heard this is a good one to take her to in the area?

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Jennifer


Wed May 12, 2010 4:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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The Parkinson's Association of the Carolinas regularly puts on seminars and Dr. Bolouri is usually the person asked to speak about LBD. (See: http://community.lbda.org/forum/viewtopic.php?t=1921)

You could do a search of past posts containing the word "Charlotte" and see if any other MDs' names come up. Start here:
http://community.lbda.org/forum/search.php

I don't recall seeing any other names besides Dr. Bolouri for LBD.

nsalavadore (Nancy) is also in the Charlotte area. She's a member here.


Wed May 12, 2010 4:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
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Jenny - don't be too surprised, frustrated or aggitated if you get a lot of different diagnoses. Like Robin said, a TRUE diagnosis can't be made until an autopsy is done, if it is done. However, you may get a lot of "best guesses", so just don't be too disappointed if that happens. Right now my dad has 12 POSSIBLE diagnoses, with his PC and neuro agreeing that he has several degenerative brain disorders. He has so many symptoms it's hard to sort out anything! I have given up thinking I'm going to hear "the right diagnosis". I wish you all the best, Lynn


Wed May 12, 2010 9:39 pm
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
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Hi...Nancy here in Charlotte...I LOVE Dr. Bolouri. He is the best. We had another neurologist, very well thought of in the area, and I did NOT like his manner. He was actually the one who diagnosed Tony but had miserable bedside manner, as did his staff. Dr. Bolouri would return calls personally, sometimes at night, and always returned faxes to the facility. His office is easy to get to, all on one floor. I know Dr. Bolouri is doing a clinical study on Alzheimers now, is advertised in the paper. He used to be in a large practice, but left to concentrate on memory, alzheimer, lewybody, etc. problems. Now that we are on Hospice, I do not get to see him. But always send everyone to him. Good Luck. Where in Charlotte are you. I actually live in Sun City, Indian Land, just 8 miles south.


Thu May 13, 2010 9:52 am
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Joined: Wed May 12, 2010 10:32 am
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Location: North Carolina
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nsalvadore wrote:
Hi...Nancy here in Charlotte...I LOVE Dr. Bolouri. He is the best. We had another neurologist, very well thought of in the area, and I did NOT like his manner. He was actually the one who diagnosed Tony but had miserable bedside manner, as did his staff. Dr. Bolouri would return calls personally, sometimes at night, and always returned faxes to the facility. His office is easy to get to, all on one floor. I know Dr. Bolouri is doing a clinical study on Alzheimers now, is advertised in the paper. He used to be in a large practice, but left to concentrate on memory, alzheimer, lewybody, etc. problems. Now that we are on Hospice, I do not get to see him. But always send everyone to him. Good Luck. Where in Charlotte are you. I actually live in Sun City, Indian Land, just 8 miles south.


I was unable to attend his seminar since my son got a stomach bug, but my mother attended and was very impressed with Dr. Bolouri. We will be taking Granny next month (his schedule is PACKED!). Thanks for the recommendation.

My Mother is east of Charlotte, Cabarrus County and I am west of Charlotte, Gaston County.

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Jennifer


Mon May 17, 2010 8:41 am
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Joined: Wed Aug 01, 2007 4:29 pm
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Location: victoria, bc. canada
Post Re: Diagnosis?
my husband's dx is lewybodies.... we have been going in crazy circles for more than 4 yrs. finally now with a psychiatrist who has started memantine to try to help the memory.

Bill's MCI has deteriorated quite a bit over the past 18months. I found the article on apathy and depression very interesting.

it may sound strange but the fact that this doc is addressing the lewy body issues head on, i feel a bit better. im not crazy after all..

we also have some support people in place thru the local health authority and i feel good about that. it's not all in my head....

we just have to keep on keeping on and love ourselves for trying....

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bless you,


Thu Jul 22, 2010 10:03 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Diagnosis?
Robin.... I'm having second thoughts about your suggestion that we obtain a second opinion. I'm planning to call our neurologist next week and ask if they will recommend a visit to Mayo Jax or Shands for us.

I'm beginning to wonder if Dale's illness is different from others who have been diagnosed with Lewy Body. The fact that he can remember his strange delusions and hallucinations after he is out of the episode seems to put him in a class by himself. It may be related to his history of sleep walking. There also may be a connection with Dale's son's bipolar illness - which we know was hereditary for at least two generations.

He does not fall - though he is very careful about getting up from a chair. In the past year, he has fallen three times that I can remember. At our age [75], I even fall on occasion. :lol:

He reads and although his handwriting is not as it once was, he does write. He gets confused but has no problem with hearing. He says his hearing is very sensitive.

Please give us the names to contact at Mayo Jax or at Shands.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Oct 29, 2010 7:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Diagnosis?
Contacts at Mayo Jax with lots of LBD experience are:
* Jay Van Gerpen, MD - neurologist (might be a movement disorder specialist)
* Tanis Ferman, PhD - neuropsychologist

Van Gerpen's webpage:
http://www.mayoclinic.org/bio/11702109.html

Ferman's webpage:
http://www.mayoclinic.org/bio/12519464.html

Dr. Ferman has published several useful items for dementia caregivers. They are worth finding. (Links may be posted on lbda.org and in other posts on the Forum.)

You can find info on the Mayo Jax webpage about making an appt:
http://www.mayoclinic.org/jacksonville/

You can do a search here of Shands Gainesville MDs. I doubt any would be as qualified as Mayo Jax is on LBD. But they may have other dementia specialists there.


Fri Oct 29, 2010 8:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Diagnosis?
Leone, just for the record, I didn't say that Derek didn't remember his delusional episodes. He just doesn't see them objectively as delusional, as apparently Dale does. And he does still write and can read [comprehension isn't there]. Still, if you have access to a good diagnostic facility, why not go for it? A member of the Spouse forum has PET scans of her husband's brain with comparisons with other types of dementia and it was found to be 'consistent' with Lewy. I think they may have been part of a study, and that was at Mayo in MN.

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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.


Fri Oct 29, 2010 8:54 pm
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Joined: Sun Sep 05, 2010 4:46 pm
Posts: 29
Post Re: Diagnosis?
I agree that the falling issue of our LO's seem to freak a Dr. out. But yes some of us fall or stumble just as much as our LO. My Mom's Psych Dr. just makes such a issue of her meds if she forgets etc. Although I know they are serious drugs how many of us forget our meds at times too?
oh well I feel better now. They just get me worked up over the med issues.
She doesn't forget as she has lived with me now for over 2 mos. Which I administer. But somehow the Doc still asks her questions about her meds which she has no clue. This week should be her move in to assisted living. I of course have problems re: the med administration. They will do it but will the nurses really keep me informed? Has anyone questioned if the Aricept is worth it? She is on 5mg. I see nothing different with any of her meds & just told the Dr. that last week when we had a visit. Is that what you all experience. Makes U feel nuts but I feel she should get off of it all. Her shaking,quivers are getting worse & now she is so anxious because her left arm/hand are shaking. Of course I see the cost of her care rising to another level of care at the ALF & i haven't even moved her in. : )
Cheers to a good week for all of U!!!
gayle


Mon Nov 01, 2010 1:03 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Diagnosis, falling, and meds - Gayle
Gayle -
Your post began with the falling and forgetting meds issues that aren't specifically about 'diagnosis' but they are related. Dale doesn't fall but he is unsteady - especially getting out of a chair - and he falls into a chair rather than sit in one. He doesn't forget his meds because he never has the responsibility of remembering them; I do.

However, what I hear you say is that doctors want us to feel guilty. Making an issue of the meds is one way to keep us somehow responsible for what is really the result of a progressive disease and not forgetting the meds. I agree that I often stumble and think... Oops, I could have fallen - and I'm not taking any meds!

In our case, I've cut back on Sinemet because Dale's delusions and hallucinations were becoming a major factor. I no longer care if the 'diagnosis' says he needs a certain dose. I'm the one who has to live with him. It seems to me that you are closer to your mom than the doctors and you have a right to observe her just as they do.

I'm sorry that 'her shaking and quivers' are getting worse. I hope you find the right combination of meds for her. I also hope that moving her to assisted living will be a good situation for both of you.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 01, 2010 7:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Diagnosis?
Here's what I don't understand: The Exelon patch is, by the manufacturer's own statement, 'for mild to moderate dementia'. My husband has been past moderate for some time and yet the doctors still insist he stay on it. There is absolutely no way of assessing its efficacy. He's been on it since early 2007.

_________________
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.


Mon Nov 01, 2010 9:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Diagnosis?
Gayle - whether or not you are kept informed about meds is really an individual situation. If you request a list of the meds your LO is one, and ask them to give you a new list every time it changes, you MIGHT get a new list. You might have to ask several times. Then again, if your facility has a decent level of staffing and the nurse(s) you are dealing with take the time to do it, you could get the info. you ask for. But, like everything else, you are the one who will probably have to stay on top of it and request several times before you get what you want.
I have been trying to get my dad off Aricept and Namenda since April. He was put on these meds without my knowledge or consent and I'm his POA. His lawyer tells me the drs. shouldn't be adding, deleting or changing meds without my knowledge or consent, but the drs. and his primary (a CNP) don't give a hoot about the family's input, and have told me as much. His CNP even threatened to sue me over the Namenda/Aricept issue, saying I was "endangering my dad's life" by wanting him off these meds, even though they are not meds that have anything to do with being life-prolonging or life-threatening, as far as I can tell. After months of fighting, it was take them to court or just put up with it and keep paying the hundreds of dollars a month for the meds. Just a few days ago I received word that they are taking him off the Aricept since he didn't recognize my sister and thought my son was his nephew, not his grandson. I think his agitation level would have been much better had he not been on these meds.
I hope the medical pros. in your area actually care what the family thinks and respect the POA and Advanced Directive documents. And, I hope you are able to be vigilant about your LOs care. It takes a ton of strength! Lynn

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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 Nov 01, 2010 9:54 am
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