View unanswered posts | View active topics It is currently Sat Aug 29, 2015 3:13 pm

Reply to topic  [ 12 posts ] 
Author Message

Joined: Sat Jul 08, 2006 10:34 pm
Posts: 1
Location: Richmond, VA
Post Misdiagnosis
I am new to this board and am glad to have found it. My father has been diagnosed with DLB only after being misdiagnosed with NPH (Normal Pressure Hydrocephalus). Has anyone else heard of DLB patients being misdiagnosed with NPH?

Has anyone on site found help from REM Sleep Behavior Disorder by using Melatonin? I was intrigued by this idea as my father's RSBD has recurred and seems to be worse this time.

Again, thank you to the creators of this association and for this forum.


Sat Jul 08, 2006 10:41 pm

Joined: Tue Jun 27, 2006 12:09 pm
Posts: 3
Location: upstate New York
Post misdiagnosis
My father was diagnosed with Parkinson's over a year ago. We went to get a second opinion because he seemed to be affected more by mental problems than the physical affects. This doctor has now diagnosed Lewy body. We have changed some emds and now see an improvement. I think that misdiagnosis might be common because Lewy Body has so many different affects that are similar to other medical problems.

Tue Jul 11, 2006 1:48 pm

Joined: Fri Jul 21, 2006 1:32 am
Posts: 2
Location: Naperville, IL
My father was misdiagnosed. First he was misdiagnosed with Alzheimer's when I found a new primary care dr. for him. I didn't think that addressed the way that he walked and the frequent falls. A visiting nurse also asked me if I was sure that he didn't have Parkinson's. I found a neurologist, MDS (Movement Disorder Specialist) who diagnosed dad with probable LBD. Dad's primary still said that he had Alzheimer's. About 1 1/2 years later dad was in the hospital and was seen by a different neurologist who did an MRI and said that because of the brain shrinkage dad may have NPH. My dad is not incontinent which is usually one of the symptoms. This was about the time that it was all over the t.v. and news. The neuro diagnosing NPH was an associate of dad's neuro. I took dad in to see his neuro and asked about the NPH diagnoses and he took one look at the MRI results and shoved it in his pocket shaking his head. Of course, after a discussion on one of dad's favorite subjects (politics) his neuro told me that he doesn't display any dementia. Boy was the "showtime" working that day. Back to the NPH. I decided that I wasn't even going to pursue checking for NPH. Dad hates going to drs. and wouldn't have wanted it, from hearing a Parkinson's neuro say that it is very difficult to diagnose NPH and at 83, I wasn't going to put dad through what it entailed. So yes, it is sometimes misdiagnosed. Hope this helps.

Fri Jul 21, 2006 2:03 am
To All,
LBD is such a hard disease to DX , Many people including my Husband was Dx with something else before LBD.

Fri Jul 21, 2006 5:19 pm

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Don't Get Me Started...
.......on misdiagnosis. Ugh!
I will emphasize that with LBD, a misdiagnosis can be life threatening due to the potential for neurolyptic malignant syndrome (sp?). While my psychotic husband was Dx with Alzheimers, he was given Zypreza to address the symptoms. 4 days & 2 grand mal seizures later kinda put the last nail in the coffin, that it was LBD....not Alz.

Showtime & denial from patients make diagnosis difficult. Lack of awareness about dementias from MDs make clinical diagnosis even trickier.

I don't know of many who have had sucess in treating REM with melatonin.
Most address it with Remeron or Seroquel. I also use depakote (valporic acid) in addition to the Remeron for Harry's REM. Like your father, he had alot of depression in his early stages.
Good luck and keep us posted on your progress (or lack of :roll: :roll: ...)
Sue & Harry in WV

Sun Jul 23, 2006 3:15 pm

Joined: Thu Jul 27, 2006 3:39 am
Posts: 2
I've read about studies (online) that 3mg melatonin given 1/2 hr prior to sleep but within the same timeframe each night. Like between 9 and 10 had an affect with many people with REM sleep disorder behavior but the study didn't say anything about people with Lewy Body disease.

One study was done in Europe and one that I read about was by the Mayo Clinic. It seems worth asking the doctor about.

Thu Jul 27, 2006 3:47 am

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Melatonin
Yes, it definately is worth inquiring about. Glad you're looking at multiple studies..........the internet being what it is, there's some misinformation, out dated information, early studies that showed promise but now we know they didn't pan out, and many contradictions. Best to research in the recent medical journals. Yeah, I know, as if we didn't have enough to do already.
Sue & Harry

Mon Jul 31, 2006 12:29 am

Joined: Tue Aug 01, 2006 6:56 pm
Posts: 2
I am new to this board, but have been on the Alzheimers caregivers forum for awhile now. My husband,age 60, was diag with Alz about 2 years ago, but has been having memory trouble for about 5 years. He is also bipolar, diabetic and on a ton of meds. Well his decline has been just terrible and he was having muscle problems. He has been demoted at work and barely able to get around,losing his sight, can't drive sleeping all the time when he is home, and I am try to get him out on disability, but his dr. said that because he was scoring better on the mini mental test for Alz. than he did 2 years ago he was unable to get him out of work and said that he didn't have Alz. now. What a shock, first I am told Alz. and than not. But, what is happening to him with the rapid decline. He told me to see a neuro, but could not get in till Oct. October, Hmm I was stunned, he couldn't wait that long, so I found another internist and he ordered a Ct scan, lab work,(he had a MRI 2 years ago) and called in a few favours and got him to see neuro in a week. We were told yesterday, that he probably has lewy body with parkinson disease and sent him for a B-12 test also. What a shock, all I want is info, and just tell me what is going on so I can deal with it. He is on Abilify for bipolar and was told to stop that med. also. He has been on Namenda for 2 years, and was now placed on Aricept. This is all new to me and I just don't know what to expect. Any help would be appreciated.

Tue Aug 01, 2006 7:15 pm
Dear Barb,
Many of our Loved ones are Dx'ed with something else, LBD is very hard to DX , I am sending a paper that I think will be helpful, I hope you find if informative, You need to be very careful with many meds so many do not go with LBD, I am glad that you found a Dr who seems to know about LBD they are few and far in between also, I am not sure what questions you have but after reading this and you have any please just ask away!


Dementia with Lewy Bodies ... nodeid=570

Tue Aug 01, 2006 9:36 pm
Dear Barb,
I also want to pass along of *bad * for LBD.
Take care :)



One of the symptoms of LBD is extreme sensitivity to many medications.


DO NOT GIVE: Haldol, Clozapine, Morphine, Demerol, or any other neuroleptics

or opiates. All medications ending in “azine” may cause neuroleptic

malignant syndrome.

Seroquel, appearing to be the least likely neuroleptic to cause problems,

has made some LBD patients worse, causing extreme

stiffness, dizziness, drowsiness, lightheadedness, vision

changes, and marked increase in confusion. Use with extreme











Dilantin....extremely careful monitoring of levels is needed

Sinemet....may cause increased dementia, stiffness, and hallucinations

some LBD patients

Tue Aug 01, 2006 10:04 pm

Joined: Tue Aug 01, 2006 6:56 pm
Posts: 2
Thanks so much for the info. It really did give me lots of information. My husband has been bipolar for 23 years and managed on lithium very well. He started having memory trouble about 5 years ago and his local dr. tested him and said mentioned Alzheimers and placed him on Namenda for mid-stage Alzheimers. This happend 2 years ago. The Namenda did help his memory, but in the last year he as really declined. He became unable to cut grass, drive safetly, make decisions, also he moved like he was in slow motion. After trying to get him out of work on disability and asking this dr to get him out, the Dr. just rolled his eyes on the last visit when the mental test was better than 2 years ago. So I found another internist and he did more testing and we went to neuro and he said he thought DLB with Parkinson overlapping. Further tests were needed and come back in 6 weeks. Now he is on a new medication for the bipolar called Abilify that the first dr. gave him because he had the tremorson the lithium. Now this new dr said to stop Abilify because of the potential risk with the Alz. This is so scary, because he must have some meds for the bipolar, but now we are dealing with this. He is also a diabetic and has macular degeneration and has had several eye lazar surgeries . Why Can't I get a dr. to sign him out of work NOW. I am frustrated, but the new internist says that we must take this in stages and make sure the diag has teeth in it so there will be no problem.
It is so nice to talk to someone that knows we are are not making this up. He really has trouble with his muscle control and strength.
I would like to e-mail you if this is possible. I really appreciate all that you have helped me with. My e-mail is below, and if you want, I will look forward to hearing from you.

Wed Aug 02, 2006 7:10 pm
Dear Barb,
I am glad you found the information helpful! Stop back here often with questions, someone will be sure to get an answer to you!
Good Luck to you !

Wed Aug 02, 2006 11:02 pm
Display posts from previous:  Sort by  
Reply to topic   [ 12 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010