Question on Mild Dementia diagnosis.
About five months ago my wife, who has significant hearing loss ah an episode of what I’ll call extreme tinnitus. She was hearing what she described as loud sirens (like this emergency broadcast test that pop up on TV). They were so loud it made her cry. I got her to our ENT who ordered an MRI which came back clear. Shortly after the mri results came she started seeing people, or ghosts as she first claimed, in the bedroom. She could describe them just as tho’ they were real people, but they disappeared when the light came on. She also saw a mother cat and several kittens in our back yard that just were not there, I went outside to look. About a week ago she saw something that involved me while I was laying in bed sleeping, right next to her. This also didn’t happen and when I turned on a flashlight, it disappeared. This scared me so I called our PCP, a nurse NP who sent a referral to a neurologist. The referral said Early Dementia, based solely on our phone conversation. We we to the neurologist yesterday. We told him what was going on and after some simple cognitive tests - three words, and one that involved an ink pen, ‘what is this, What color is it, what’s it use for? She of course knew, then he said “show me how you’d use it”. I myself did not really understand but he said with your hand (he wanted her to pretend to write with her hand) Partially be because she didn’t hear well, didn’t understand. Then it was “What month is this, what year, where are we now?” Which she knew , then “where are we?” After a short pause, she said “in your office”. Then he said “point at the door”, which she did. Based on this, he said she has Mild Dementia and prescribed Rexulti and said he wanted to see her back in 6 weeks. I had the CD for the MRI our ENT had ordered, and the report but he said he didn’t need to see this.
When we got home I did some online searches and everything I found said hallucinations alone, with no other cognitive symptoms, would not lead to a diagnosis of mild dementia. Others have suggested Lewy Bar or Charles Bennet but she’s not showing any symptoms of those either. I’d hat to accuse the neurologist but I almost wonder if because the referral said dementia, that’s what he looked for. A few years ago I watch our next door neighbor, about 10 years older than my wife, deteriorate rapidly from dementia. This scares me to death and I’m not sure I want my wife to start taking Rexulti.
Hi
, I'm glad you found us. It is always important, if your confidence is low, to seek a second opinion. I'm not sure if he explained the medication, but Rexalti is not used specifically for treating dementia. It is prescribed for anxiety and agitation often associated with Alzheimer's as well as depression and schizophrenia. This should help her with the hallucinations.
I wanted to share a couple of articles about diagnosis, to help with any questions or concerns you have, and to help you formulate questions for your return visit:
https://alzheimersdisease.net/diagnosis
https://alzheimersdisease.net/stories/toms-diagnosis-story
https://alzheimersdisease.net/living/not-right-diagnosis
Please know that we're here to share support and to walk with you on this journey. There is a lot of knowledge and wisdom in this community. PLease don't hesitate to reach out with questions, or if you just need a friendly ear. - Warmly, Donna (Team Member)Thank you. I’ve spoken to a pharmacist this morning who explained the drug to me, pretty much like you have. I also asked her about drug interactions with two other prescriptions my wife takes and she said they are rare and if they do happen they’re not permanent. I’ll have to get back to the links you’ve provided, I have to go to my own Dr. appointment. Ain’t life grand?
I know I spend too much time looking things up online and have been told - by a doctor - that I overthink things. But I keep running across this Lewy body thing. One forum, (on Reddit r/dementia) that said if my wife takes Rexulti and it’s Lewy Bar, it’ll make it worse. As I said before, the reason I took her to a neurologist in the first place was because of her auditory and visual hallucinations. She doesn’t seem to have memory loss. Again, no real symptoms of LB except “acting out dreams or talking in her sleep”. Not so much acting out but she’s talked in her sleep for years. (Except once about four years ago when I became her apponent in her dream). The neurologist we went to came up most often in a local group search and the med group he’s in is otherwise highly regarded. There aren’t many others in my area so I’m a little reluctant to seek a second opinion, which has been suggested. We have a follow up appointment in 4 1/2 weeks. I don’t really know what I’m asking here. Oh, the pharmacy still hasn’t received the pre authorization from the insurance company. Like Tom Petty said, “The waiting is the hardest part”. At least for now., I can understand your apprehension when you put it in those terms, have you shared that with her doctor? Have you talked to her doctor about a screening test? If he is not open to it, you could seek a second opinion.
I wanted to share some information on LBD that may be helpful:
https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
These three journals look at differentiating between LBD and AD:
https://bit.ly/3M3li0W
https://bit.ly/4bExFuG
https://bit.ly/460DaAi
I can understand being wary of looking for a second opinion, but you should not have to feel like you are n this alone. You can find a neurologist/dementia specialist by area here: https://www.medifind.com/
I hope those may be helpful in your fight for help and peace of mind. Keep us posted. - Warmly, Donna (Team Member)
After a five day delay, some kind of mixup at the pharmacy, I picked up the Rexulti yesterday. My wife, already a bit upset with the diagnosis read the prescription facts paperwork that came with it. The side effects of this stuff is terrifying (aren’t most prescription meds?). Some completely inconsistent with her other medical problems; weight loss and keeping her A1c down, but still considered pre diabetic.. the side effect of ‘increased appetite and weight gain’ and blood sugar spikes, for two. She’s pretty upset about it all. I tried calling our PCP yesterday but their phone was down. Got ahold of the office this morning and am waiting for a response. Yesterday I also called our neurologist’s office and left a message. His office called back this morning and said she can hold up on starting the Rexulti and we can discuss our other concerns at our next appointment on March 11, so we do have a little breathing room for a bit.
Something else I’ll throw out there; I’ve found a local Caregiver Support Group that meets twice a month at the local hospital. I’ve called three times, left a message yesterday with no return call, and twice today to hear the same ‘leave a message’ recording. Anyway, it looks like I might soon become a care giver who’s gonna need all the help and support I can find! I have medical concerns myself which could potentially get worse at some point. So I’ll keep trying. (My wife will be 78 in March and I’ll be 77 in April but I feel like I’ve aged five years in the last five weeks!), I'm glad that he gave you a little space with the start of the medication. There is a real concern regarding blood sugar. You can ask him about Abilify and Vraylar, both are similar to Rexulti and don't list blood sugar concerns.
You should be eligible for assistance through Medicare, since you both have health concerns, and limited help. I hate when the support groups don't help. I had a similar situation when I had my first child. It makes you feel alone. Have you checked with alz.org? They can help you Connect with a local group. You can also ask the neurologist; he may know of an active group.
Looking forward to hearing things have smoothed out and you are both feeling confident. - armly, Donna (Team Member)
Update: I finally got through to the director of the support group yesterday. When she answered the phone she called me by name, she had seen the phone messages I’d left and I was on her call back list. Turns out, she’s also the coordinator to the geriatrician who my PCP originally mentioned and does scheduling for her. Yesterday she said she could probably get us in around the 2nd week of May. When I called her back this morning (after talking to my wife) she said they’d had a cancellation and we set an appointment for April 28th, much better than June I was told when I first called. It’s still more than a month after our next neurology appointment but it might give us more perspective of what’s going on. Plus, the office is about an eight minute drive as apposed to 35 to the neurologist.
this is all great news. I am glad to hear this. Please keep us posted. Jill (Team Member)
