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Joined: 12/2/2015
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For at least 4 to 6 months, I've been having this strange thing happening. I hear what sound like singing, talking, or conversation taking place somewhere outside the room I'm in. I sometimes go to another room to see what it is, find nothing, return to what I was doing, and I keep hearing it. It is usually something that sounds like singing, but it can also be some type mechanical type sound. I frequently go around and turn off anything that might be producing sound, and it stops. I usually can determine the exact source of the sound, but the sound is not the sound that I'm hearing, even though the sound I'm hearing stops when I turn the item off. It isn't bothersome or scary or anything, not threatening. I'm not hearing voices telling me to do anything. It isn't inside my head, but I'm actually hearing something that is making a sound, only I'm hearing a totally different sound...like someone singing a song with words when the sound is actually coming from the heating system or something. I've never had this before. It doesn't happen every day, but mostly every day, and sometime numerous time throughout the day. It is really weird. Is there any way this might be related to Alz, or is just something I should ignore and forget about. Just wondering. And by the way I'm not going crazy and I'm not stressed out when this happens and it is not upsetting. But it is odd enough that it gets my attention right away. Thanks.
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Joined: 12/15/2011
Posts: 18689
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This is not unusual. Do a google search for tinnitus. Or it could be as simple as ear wax buildup.
Iris L.
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Joined: 3/3/2016
Posts: 9
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It's interesting that you posted this. I've noticed something similar. It's not like ringing in my ears, or buzzing, that would be more like tinnitus, but it's distinct sounds, like someone talking (more like the rhythm and tones of speech, but not really clear words.) Or doors closing, dogs walking on the hardwood floor. I've assumed it was just my imagination, or my brain trying to make sense of some other sound. It's started in the last month or 2 for me. Usually happens in the evening.
Feels similar to my eyes playing tricks on me: i.e. today when out to eat and putting my leftovers in a box, checking my plate to be sure i got everything, then later looking at my plate to see a large (like 4 inches long) carrot still on it.
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Joined: 9/12/2013
Posts: 3608
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I have hearing loss and confuse sounds all the time. I do hear things and ask Keeper if he hears it too. He usually says "no" but I will look for the source.
My dog tells me if anything is happening outside.
Not seeing things and then seeing them - happened a lot to me for a year or so! there is an imaginary gremlin/myth who I would say was moving my stuff.
A hearing specialist told me once some of the sounds I heard were "nerves dying" in my ear.
I have also wondered if I am hearing things other people can not - as in they are not false sounds, but a thinning veil to other dimensions.
Interesting.
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Joined: 12/15/2011
Posts: 18689
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These past two weeks I have been sick with the flu. I thought it was a cold, but it is the flu. I have paroxyms of coughing at night. This puts lots of air into the bowel. In bed during the night, after a paroxysm of coughing, I can hear the gas in my bowel. This is not flatulence, because it is not coming out of me, but moving around inside me. The medical term is borborygmi. As I'm listening to the borborygmi, I can hear them call names: "Steven"... "Harold". This is not an April Fool's joke, this really happened. I think my brain was playing tricks on me. I don't even know anyone with those names.
Iris L.
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Joined: 5/20/2014
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Iris,
I hope you are feeling better. Borborygmi what a nice name for gas! The sound of dog barking used to awaken me sometimes but I must have been dreaming because he would be sleeping. I've heard people talking before and my name being called.
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Joined: 12/2/2015
Posts: 1018
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I guess this is just all part of the new wonderful world of Alz. In addition to the sounds, I also see things out of the corners of my eyes, usually outside a window. I think I see a person or something moving past, then I jump up and look...nothing there. Happens a lot. Never used to, at least I don't recall it. Tuesday is my big second opinion day. If I can remember, I might ask about this, but I probably won't remember to toss it in because it isn't a big deal to me, just a strange deal.
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Joined: 11/29/2011
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Bill, do make a list and keep adding to it. Bring it with you to the doctor's and open it.
Nothing is unimportant.
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Joined: 12/2/2015
Posts: 1018
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Mimi S. wrote:Bill, do make a list and keep adding to it. Bring it with you to the doctor's and open it.
Nothing is unimportant.
===========
Mimi, thanks for reply. This interesting. I've asked a couple of times on different boards here about taking notes to the evaluation. I've kept fairly decent notes for the past several months while waiting for this exam date. But almost everyone who responded said that I should not take my notes to the evaluation. I guess because some doctors think we must be ok if we are ok enough to take notes. I know from years working with doctors in lawsuits, that many doctors think patients who bring notes to exams are head cases, so that is why I asked. I know the AA says to make and bring notes. I don't know what to do. I am going to try to put major examples on one piece of paper, but I'm not sure about the normal stuff, since I'll probably remember most of that without notes. I just want a valid, solid, evaluation. If I probably have Alz in their minds, then I want them to say so. I already know what my problems are, but my wife needs to be pushed hard by someone she believes to be an expert, and she is fine with the doctor I'm going to see and medical center's memory center, so I want to make the best of this so we can leave and go full speed at doing the things we (mostly my wife) needs to do to be ready for the train speeding down on us. Of course, I would love to not have Alz, but I know I have something, what doesn't really matter that much. As they have already ruled out all treatable stuff in the first exam. Only question now really is MCI, Alz, some variation of Alz, and what stage. At least I think that's where we are now. That and listenting to them telling me to stop driving, which I will when I'm no longer safe, but I'm still safe enough right now for the limited places I drive to.
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Joined: 11/4/2015
Posts: 60
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Bill ... I agree with Mimi about bringing notes with you to the evaluation. I keep a running list of my mom's symptoms, and update this list accordingly, each time I take her to the neurologist. Its the first thing that I hand to him as we are walking into this office for a consult. This list was a motivating factor for the neurologist to prescribe Namenda for my mom when her symptoms were progressing. If you feel that your self reporting won't carry enough weight then perhaps your wife could submit a list and/or else concur with what you have observed, just a thought. In my opinion every piece of the puzzle should be included in a thorough evaluation, including your own observations. Sending you blessings for next week. hang in there.
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Joined: 12/15/2011
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BillBRNC wrote: Only question now really is MCI, Alz, some variation of Alz, and what stage.
Bill, do YOU have questions for the doctors? Such as, Are you interested in enrolling into a Clinical Trial? Might there be genetic information to pass onto to the children?
The specialist's main role will be to make or confirm a diagnosis, and to offer medication, and to warn about complicatons, and to give you an approximate idea of the prognosis.
Best wishes on your appointment.
Iris L.
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Joined: 12/2/2015
Posts: 1018
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Iris, what we would do without you around here? Thanks for keeping me focused. Bill.
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Joined: 12/2/2015
Posts: 1018
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Oh, Iris you might find this interesting. The head doctor on the "team" did her residencies in internal medicine and geriatrics at the same hospital my wife trained at. It is the same hospital my wife admitted to for probably 30 or more years. My wife doesn't know the doctor, but the doc is quite bit younger than my wife. It will be interesting to watch the two circle each other during the checking out phase. Two women doctors in the same room can be a little much, same as two male doctors in the same room. Hard to fit those egos in such small places. My doctor is also a Prof at the medical school there. Alzheimer's is all she does, and the memory clinic apparently is a separate entity within the neurology department. Not sure how that came about or if it means anything. They also have shrinks and such on the "team," so it should be quite a time. Who knows, maybe they say it is all in my mind.
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Joined: 12/15/2011
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Bill, you're going to experts. They know about the scientific knowledge, but WE know about living with impairment and dementia. At best, a diagnosis of AD is a rule-out of what it couldn't be.
Since they are a referral center, they do not see many regular patients. They see the more complicated patients. You know how you are doing. Ask if it is okay for you to sky-jump. Then follow through! 
Iris L.
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Joined: 11/21/2015
Posts: 237
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A hearing specialist told me once some of the sounds I heard were "nerves dying" in my ear.
Aw darn, that dying explanation is sad!
Alz+, I'm wondering if your shingles antiviral is helping improve any of your symptoms.
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Joined: 5/20/2014
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Bill,
I agree with everyone about taking the notes to your appt. In fact, I told my neurologist that I come to this site and was advised to do so by PWD. Some of us here obviously were always resourceful and still are irregardless of neurological impairment. Perhaps this has something to do with cognitive reserve and some of the Dr's not understanding the concept of cognitive reserve? Also the Dr's not understanding the capacity that can remain intact for PWD during the early stages.
On the other hand, it is difficult to understand how a Dr specializing in diseases and trauma of the brain doesn't understand that the disease processes of dementia does not render a PWD helpless all at once.
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Joined: 12/2/2015
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llee08032 wrote:Bill,
I agree with everyone about taking the notes to your appt. In fact, I told my neurologist that I come to this site and was advised to do so by PWD. Some of us here obviously were always resourceful and still are irregardless of neurological impairment. Perhaps this has something to do with cognitive reserve and some of the Dr's not understanding the concept of cognitive reserve? Also the Dr's not understanding the capacity that can remain intact for PWD during the early stages.
On the other hand, it is difficult to understand how a Dr specializing in diseases and trauma of the brain doesn't understand that the disease processes of dementia does not render a PWD helpless all at once.
====
llee, this is what worries me the most. I read about how the mini exam is what everyone seems to start with, or some type of it. Well, I can answer those questions in my sleep. What day is it today? Hell, do they really think I don't remember what day it is when I'm there for the exam on the appointed day. Now, do I have to ask my wife virtually every single day when we get going what day it is, then ask her a couple more times, yes I do. Do I show up for appointments on the wrong day? Yep. Do I forget what day tomorrow is? Most of the time. Do the docs seem to ask those questions? No. Do I know the President? Hell yes. Can I draw a clock. No much problem there. Can I do half the things I could do two years ago? No way in hell. I used to have an IQ of 135, graduated 2nd in class in law school, senior partner at national law firm, handled tens and hundreds of millions of dollars in negotiations, and did so many really cool things I can't even remember half of them, but can I remember my phone number? Not most of the time, but some of the time. Can't keep up with my bills, checks, or that stuff. Drive somewhere and then have no idea why I drove there, a whole lot of the time. Don't recall even driving there, some of the time. Blow my top because of noise, confusion, anxiety. Hell yes. But all the docs seem to use that stupid mini test to say whether I have problems. I don't want to have Alz, but I am smart enough to research, read, and know there is something really wrong, and it isn't gas from tacos. I'm just frustrated. That's all. I guess I just have to trust that the experts I see on Tuesday will be experienced enough to look at everything and reach a reasonable diagnosis. I hope for something fixable, but I'm not betting on it, but I sure hope for it. End of vent. Oh, I'm going to take some notes of just what has happened during the time I've been waiting for this damn appointment. The earlier stuff I remember enough to get the point across, but the stuff in the just the past few months is enough to curl my toes, so that should be more than sufficient. But of course, if I can keep notes, then I must be normal. Hell, I'm 65. Virtually everyone I went to school with is still working full-time. I had to stop years ago. But hey, stopping work isn't all bad. Just saying.
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Joined: 12/15/2011
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Bill, I don't remember if you have had the extensive 6-hour neurocognitive testing done by a neuropsychologist. The mini-test is merely a screening test, to let the PCP know that further evaluation is indicated.
Let the doctors know what you indicated above. And prepare a list of questions for you to ask them.
When is your appointment? We'll be thinking of you and I'll be praying for you. Best wishes.
Iris L.
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Joined: 12/2/2015
Posts: 1018
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I'm having the multi-hour testing during the second opinion exam this Tuesday at a place about 2 hours from where I live. My primary care doc gave me the mini thing, and I missed the one about remember something he told me, then asked me about it again a few minutes later. And I apparently had a couple minor messes on the subtract 7 from 100 and keep going down, but I got almost all of it. The clock test was fine, same for knowing the day of the week and the President. Anyway the PCP is the one who actually wanted me to go to the memory assessment place, plus I wanted to go and find out for sure. My PCP thought I had some type of what he called worrisome neurodegenerative cognitive declines. I think that was based mostly on the history I gave him. He and I are good friends, so he believed what I was telling him. He just said that he wasn't really qualified to say exactly what is going on, though I think he is qualified. I've know lots of PCPs over the years, and even my PCP wife thinks he is the smartest one she's ever worked with. Comes from being in a mostly rural area, where the PCP used to be the only game in town. And he actually is somewhat young at around 52 or something like that. My wife practices part-time with him. I don't know what I think anymore. I realize many folks on the Boards think I should do this or that, but I'm just feeling my way along. My main goal is to do whatever I can do to delay the time I can't be left alone, which I hope is a long way off, but they are already looking a little concerned about my driving, which I think is ok so long as I stay in familiar places without a lot of traffic, which fairly well describes the little town I live in (only a couple stoplights in the entire place). Anyway, just getting a little anxious since Tuesday isn't too far off now, and I've been waiting for serveral months now to reach my appointment date.
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Joined: 7/24/2015
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It seem be pret common dementia. It be break down in processing what you be hearing...so we wrongly turn some noise in diff sound. The furnace sound me like baby crying in distance...I can no get ove it how real it be sound.
To true understand this one need understand interesting thing brain. The brain looks at sees very little, hears very little...tastes ver little...what it does, more oft than no...is "recall" some thing. Like when you walk in room, rather than see room fresh...brain simply recalls room...only sees changes, novelty. Same for all other senses.
So it is real no mystery me that when brain be start going...it will wrongly recall/assemble an image...see a shadow assemble a pers...hear a machne, assemble talking.
Further getting in it...if you think bout how we see...or rather no real see what is in front us...when we look at tree, *think* we see green leaf...really...leaf absorb red light (be red)...reject yellow an blue light...we see what it is no...think it real.
Brain super powerful that way. It near impossible assemble red leaf...when you brain want be assemble a green leaf...no amount of knowing make it change.
But most peop I know with dementia report sounds, smells, visuals, an tastes be strange an unusual. They oft call halucinations...but is no same thing as. It just be wrong assembly in brain. Usually it is no disturbing pers having it happ...like part brain ok it. Saving grace may be? Who knows.
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Joined: 12/15/2011
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I completely misunderstood. I thought you already had a diagnosis of Alzheimer's Disease. But in fact, you have a suspicious mini-mental test. Your evaluation is just beginning.
Go forth, and see what it shows. Do not think in terms of "failing." The test just shows how you are doing at this point in time.
Try to be rested for the test and the consultation. Let us know how it went.
Iris L.
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Joined: 5/20/2014
Posts: 4408
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Bill,
Thoughts are with you today.
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Joined: 12/15/2011
Posts: 18689
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May you get answers today, Bill.
Iris L.
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Joined: 12/2/2015
Posts: 1018
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Well, I just got home. Iris, my initial diagnosis done locally was "worrisome progressive cognitive declines, probably neurodegenerative." Second opinion exam today at memory assessment place. Had the tests, history, and all that stuff. At the end, the main doc (who did residencies in internal medicine, geriatric, then fellowship in geriatrics, if I got it all correct), explained the neuro test stuff, which she is going to send me in writing. What I recall is that I had problems is multiple areas, some in the advanced mild, some in the moderate zones. She said that I probably had Alz, but there is a small chance I have vascular due to my heart failure (this is contrary to what my cardiac expert says). I will be going back in a few days for what she called a glucose Pet Scan, which she says is very reliable for vascular, and fairly reliable for Alz. Then she will call me within 24 hours so she said. Regardless of the results, she wants to put me in the IDEAs study, where I'll get a different type of Pet Scan, but that will take an unknown amount of time to take place. Her bottom line was that she will be able to tell me to her satisfaction whether I have vascular dementia or Alz from the first Pet Scan, so with luck I'll have something solid within a week at the outside. They are supposed to call me tomorrow about the glucose scan, which should be done within two days probably, then called with results with a day to day and a half. Seems that she thinks I have mild to early moderate dementia of some type, with the only open question being whether it is vascular or Alz. She said the uncertainty comes from some of the details in the neuro tests, which resulted in some out of the usual combinations of something. Truth be known, it was a tad unclear to me what the uncertainty is about, but I'm glad to know that I'll have at least the first Pet Scan right away, with the clinical trial thing to bolster whatever her conclusion is. I think I got this more or less right, but I tired now and wife and I going for a walk then dinner. If it is vascular, I guess I'll love shoving it down the throat of my cardiologist who said no way in hell it is vascular. It sounds to me that I'll know in no more than a week what I truly want to know for my current planning purposes. I have no idea whether vascular is better to have than Alz, but the doc clearly was hinting that she thinks it is Alz as opposed to vascular, but she seemed hesitant due to some of the neuro test stuff. I hope this all makes more sense to you, as you know far more about this. My wife is a tad numb, but she clearly is hoping for vascular over Alz. Hope everyone had a good day today. I am just glad the difficult part is over, as I can still drink wine just fine. Oh, and she put me on Excelon pills, which I think is what it is called. My wife just dropped it off at the pharmacy, so I won't start until tomorrow. She said they would raise the dose in 30 days.
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Joined: 9/30/2015
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Bill it sounds like more or less what you were expecting and though it is hard it will be worth it in the end to know exactly what is going on. Thanks so much for the update and letting us know what is going on with you. You have been in my thoughts today.
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Joined: 12/15/2011
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Whew, what a day! It sounds like you have had a thorough evaluation, Bill.
There are several threads about the different PET scans, if you care to search for them.
The main distinction of knowing if vascular dementia is involved is that treating the cardiovascular issues may have an effect on slowing the progression of the dementia. The memory medications of Aricept and Exelon are thought not to be of benefit in vascular dementia.
In my case, blood pressure is an issue, so I am diligent about keeping my blood pressure low. Nevertheless, some patients have a mixed dementia.
Did you go to Duke University? That's were Dr. Doraiswamy is, who wrote the book, The Alzheimer's Action Plan.
It's great that they can order the PET scan so quickly for you.
Give yourself time to process the appointment. Were your questions answered?
Iris L.
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Joined: 11/21/2015
Posts: 237
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Hi Bill, thanks for reminder of legal term incapacity vs what I used before, incompetency.
Anyways, I totally understand frustration of diagnosis. I know my progressive declined after bout of severe flu anbd docs refuse to test for viruses. ugh! its obvious to me and I'm not even a medical person. I obtained some tests on own but they just ignore. I always ask for antiviral.... oh, but I didn't go medical school :/. How can they deny a blood test result?!
im wondering if EEG would tell us what part of our brain is failing. anyone know about EEG tests?
wishing you peace Bill!
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Joined: 5/20/2014
Posts: 4408
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Bill,
This IS a lot of information for you and your wife to process. Both of you need some time to sit with this for awhile. You knew that it was dementia but there still may be some difficult emotions ahead. Hopefully, after you get confirmation about AD or vascular dementia and all this marinates and settles within you will also feel a sense of relief knowing the truth and the frustration of the unknown will leave you.
Finally, there is validation of the feelings, concerns and suspicions that you have had all along. The appointment sounds like it met your expectations in getting answers and all the cards on the table. Take some credit for getting to the bottom of this conundrum... well done Bill!
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Joined: 12/2/2015
Posts: 1018
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Iris, I went to Wake Forest Baptist Hospital, which is 2 hours away. Duke is 4 hours away. Duke seemed to have an excellent program, but so does Wake, so I decided on two hours. The vascular component for me would be heart failure that started as probably viral dilated cardio myopathy with an Ejection Fraction of 10, so I was on the transplant list for about 6 months, but I improved enough to get off the list. Over the next couple years, my dilated issue turned into diastolic heart failure and a stiff heart, but still heart failure I'm told that I am a one in a million when it comes to heart failure, but that is probably just doctor talk. But I am as good as I can get now, and the only direction my heart might take in the future is in the bad direction, but there is a chance it will remain stable. It has been stable, although not very good, for about 2 years now, which just happens to cover the time in which my Alz symptoms have gotten much worse, so I guess that is why the doc thinks I probably have Alz as opposed to vascular. She told me about the Excelon issue, which is another reason, plus she seemed very interested in my being in the clinical trial, all of these things would suggest to me that she thinks Alz and not vascular. Anyway, the heart failure isn''t going to get any better than it is right now, and I fluctuate between Class 2B and Class 3A on the impairment scale. Oh, and the doc said that it is possible that the heart failure sort of kicked the Alz into becoming symptomatic. I'm not really sure what the significance is. The problem is that all of this has been going on at the same time for the past 7 years, and I only recently realized that my heart might not be behind the memory stuff. She also said that I had or have a huge cognitive reserve that makes some of the testing evaluating more difficult. But I am not entirely sure what that means either. After the glucose pet scan, she is going to give me her detailed opinion and more recommendations, plus staging and all that. She thinks the Excelon might make it possible for me to remain independent for longer, so I'm all for that. I don't know why, but she didn't seem to like Aricept, but she didn't exclude it from future use. I told her I was more interested in controlling the behavior, mood, anger stuff than the memory stuff, so that might have played a part in what she decided. I just hope to hear today about the time for the Pet Scan. She thought I might be able to get it done this week, which would surprise me a great deal, but make me happy to. Good luck to us all.
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Joined: 12/2/2015
Posts: 1018
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I knew it was too good to be true. Hospital just called. Pet Scan scheduled for April 15, a week from this coming Friday. I just hate this waiting around, but I know I'm lucky to get the date as soon as it is anyway. Nothing moves quickly when it not emergency. My wife will be a little bothered about the delay, but she thought getting it done this week would be impossible when the doc told us that yesterday.
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Joined: 11/29/2011
Posts: 7027
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Bill,
You'll make it. Does your wife know if the PET scan you are scheduled for is the Pittsburg compound one?
How about the neuro-psch testing?
Are you exercising several times a week?
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Joined: 12/2/2015
Posts: 1018
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Mimi S. wrote:Bill,
You'll make it. Does your wife know if the PET scan you are scheduled for is the Pittsburg compound one?
How about the neuro-psch testing?
Are you exercising several times a week?
+++++++++++
Mimi, the Pet Scan I'm having first is a Glucose Pet Scan. I don't know anything further about the details other than what I mentioned before. I'm not sure of the question on neuro-psych testing, other than I had a bunch of tests, lots of oral questions, lots of doing things on paper, and other such stuff. Yes, I exercise regularly, as indoor cycle for 40 to 45 minutes every day, plus walk outside when weather ok. I'm in decent shape overall and everything considered. I do have heart failure, so that limits things in terms of intensity of anything. I eat ok, not great, but good enough for me and probably for my doctor, although I haven't finished with her yet until after the Scans when she gives me her full opinions and recommendations. For now, I'm just taking Excelon pills, with dosage to be upped at my next regular visit in 30 days. Since the place is 2 hours from where I live, I don't know if I will continue there or go local after I get full diagnosis and recommendations. If I end up in the clinical trial, then I guess I'll stay with the 2 hour drive. If the Glucose Scan shows whatever is considered to be the classic Alz look, then that combined with testing might exclude me from the trial, because I think having a questionable diagnosis is required for the IDEAs trial, but I'm not at all sure about that.
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