tag:blogger.com,1999:blog-6426202096598051070.post8910294004785544641..comments2024-01-04T09:23:45.843-05:00Comments on Watching the Lights Go Out: When Experts Disagree (I)David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-6426202096598051070.post-79221056294392233002014-01-28T18:14:43.986-05:002014-01-28T18:14:43.986-05:00I don't remember any comment about differences...I don't remember any comment about differences between or recognition or recall. I do have a copy of the test itself but can't tell from the two- or three-word descriptions what's what.<br />It is fascinating, however, that there are such fine differences between the two diseases. I imagine there are overlaps in some patients, though.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-51875842329768873202014-01-28T15:29:56.594-05:002014-01-28T15:29:56.594-05:00Just curious, did the tester make any comment on i...Just curious, did the tester make any comment on if your recognition memory was better than recall ability or say anything about benefiting on testing from hints or repetition? I work at a Cognitive diagnostic clinic as a health educator and often review and interpret reports for patients and families. People with vascular cognitive impairment often benefit more from cues and hints to access stored memories than people with more of an Alzheimer's like pattern where the memory is not stored to begin with so hints don't help. In "General" memory issues related to vascular disease tend to be more a problem of access and retrieval than initial encoding of memory but of course that can vary depending on where the damage is occurring the brain. Of course considering that you are in a MCI like stage or earlier even that distinction may be hard to quantify.Lizroxy24https://www.blogger.com/profile/17915927561165492917noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-56824195367407172022014-01-15T20:18:50.854-05:002014-01-15T20:18:50.854-05:00I've always believed that if you don't lik...I've always believed that if you don't like your doctor, for whatever reason, you should (if possible) switch doctors. it's always been my feeling (an my personal practice in finding a physician) to insist on someone who listens carefully to me and is willing and able to dedicate enough time to me. In most cases those criteria trump any supposed advantage of greater technical or intellectual skill. It's no news that there is an unfortunate tendency among physicians to spend less and less time with patients and use technology more and more (especially medications). But one of the problems is that the psychotropics AND the Alzheimer medications can worsen behavior problems, too. Too often another medication is then ordered to solve the problem the first one caused. When I was a physician, I would sometimes admit older people with many, many different medications. Often, at the beginning of the process in the nursing home, I'd just stop them all (or almost all) and add back only what was necessary ... which was usually only one or two. (I would never recommend that course to you or to anyone that I hadn't examined and planned on caring for in the future.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-28397599850571626232014-01-15T16:34:23.566-05:002014-01-15T16:34:23.566-05:00It turns out that it's highly unlikely that my...It turns out that it's highly unlikely that my diagnosis is Alzheimer's. Starting with my post on Oct 30, "Letting Go of Alzheimer's, I've been trying to work with what all the tests mean.. My several PET brain scans were negative and the false negative rate for them is very low; there's almost no chance it's AD. So it's been quite confusing. I'm thinking more now that it is vascular cognitive decline, but that's not at all certain, either. I'll have more to say about that in a week or so.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-72321422858157214482014-01-15T16:25:00.706-05:002014-01-15T16:25:00.706-05:00The article is great, and I'll be writing abou...The article is great, and I'll be writing about it soon. It can be found at: http://www.medscape.com/viewarticle/808581 David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-81371930651230474222014-01-15T10:37:14.423-05:002014-01-15T10:37:14.423-05:00My mother's psychiatrist has been completely u...My mother's psychiatrist has been completely unable to calm her dementia-related agitation. Could SSRIs and other psychotropics actually be worsening cognitive impairments? He attends to her so curtly that I find it criminal. Her 15 pills a day must be wildly interacting or even toxic. Her character is unrecognizable to me. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-79380316855602536822014-01-15T01:56:27.854-05:002014-01-15T01:56:27.854-05:00is not this a proof that you do not have alz's...is not this a proof that you do not have alz's as short term memory is always impaired in all cases?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-31866213279090277712014-01-14T22:03:00.046-05:002014-01-14T22:03:00.046-05:00I suspect you're correct. It was after the spi...I suspect you're correct. It was after the spinal tap that they hinted (wouldn't say so outright) that she had the family disease, and I inferred that it meant the Lewy bodies were in the spinal fluid. But it may have been the results of all the tests they gave her.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-89403042150092757272014-01-14T20:27:42.524-05:002014-01-14T20:27:42.524-05:00I read an article by Susan Jeffrey dated July 29, ...I read an article by Susan Jeffrey dated July 29, 2013 titled "Subjective Cognitive Impairment: The Next Big Thing?" at www.medscape.com. It is about 6 pp. long and summarizes some of the research. There is likely to be more information since then that I haven't read.<br />Anonymoushttps://www.blogger.com/profile/07960305992233295304noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-67612683215378845342014-01-14T18:19:35.072-05:002014-01-14T18:19:35.072-05:00While, as I mentioned above, the PET amyloid scans...While, as I mentioned above, the PET amyloid scans for Alzheimers have a very low false positive rate (ie if the results are normal you almost certainly don't have AD). In your husband's case, his results are positive and false positive rates are about 20%, so the primary neurologist is correct that the results are accurate only 20% of the time. Distinguishing between AD and frontotemporal dementia (FTD) is quite difficult. I think, but I'm not sure that there is evidence on the PET glucose scan of decreased function in the front of the brain. But the first symptoms in FTD are usually quite different from those in AD. The problem is that they can overlap.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-25073378882781907682014-01-14T18:13:49.211-05:002014-01-14T18:13:49.211-05:00As I mentioned above, I'd settle for primary c...As I mentioned above, I'd settle for primary care doctors recognizing that there can be cognitive impairment even in the face of normal screening tests and, therefore, referring all patients with subjective cognitive complaints to neurologists for further detailed testing. While some primary care doctors will get extra training to interpret more complicated test results, most would not (and can't be expected to). But they do need to know when a referral is required.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-46605350541443707492014-01-14T18:10:12.959-05:002014-01-14T18:10:12.959-05:00It depends on what you mean by short-term memory. ...It depends on what you mean by short-term memory. I just led a two-hour seminar for post-college students who are interning in our nonprofits in Washington, and I had no trouble at all responding to the students question, remembering what had been said, or speaking quite appropriately,<br />On the other hand, if I saw one of them tomorrow, I could forget a name. When I read books to my grandchildren, they have to tell me what we read the previous night. I will completely forget conversations from a month ago.<br />So really short-term memory is fine; mid-term memory is definitely impaired. And my long-term memory has been impaired for at least forty years, so I can't say if anything has changed.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-86356704848572907232014-01-14T17:54:02.072-05:002014-01-14T17:54:02.072-05:00In my case, there's no incentive at all for ov...In my case, there's no incentive at all for overlooking evidence of impairment. The testing was done at the National Institutes of Health under outside funding, so there would be no financial incentive for anyone. If anything, the incentive would go the other way because the researchers are very interested in early cognitive impairment and would favor positive results.<br />Even in normal medical situations, there would be no financial or other incentive for interpreting positive tests as normal. One might argue that in a health maintenance organization there is an incentive to avoid ordering tests, but, once ordered, no reason to report negative results. In fact, in that situation a negative test would be perhaps even more likely to lead to more testing as doctors tried to figure out what was wrong.<br />But the overwhelming fact is that a doctor intentionally reporting false results is going to eventually be discovered and that will destroy his/her career and subject him/herself to very expensive law suits. <br />In my case, for instance, if I were to come back in a year and repeat neuropsych testing were to reveal more obvious impairment, the attending doctor would very likely go back and check the previous exam. If there were evidence that the first interpreter misreported something obvious, his reputation would suffer significantly. If there was any evidence it was intentional, his career would be over.<br />David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-41881828310901881622014-01-14T17:32:30.296-05:002014-01-14T17:32:30.296-05:00The latest news indicating that the neuropsych tes...The latest news indicating that the neuropsych testing from August does indicate cognitive impairment is actually reassuring because it supports my own experience. It doesn't really add any new information but rather removes a confusing contradiction between my subjective experience and objective test results.<br />According to the research I've done, the PET scans for AD have a very low false negative rate (ie if the test is normal, there's little likelihood that the person has AD), Given that I've had three such negative scans, the likelihood that I have AD is vanishingly small. I've come to the conclusion that I don't have AD. I'll write about this perhaps next week, but I'm now guessing my impairment comes from vascular disease (ie mini-strokes). I'll see my neurologist in a few weeks and get a more objective, more educated opinion.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-91243468099532027362014-01-14T17:22:39.491-05:002014-01-14T17:22:39.491-05:00Thanks, Mark.
Finding out that my cognitive test...Thanks, Mark. <br />Finding out that my cognitive test did indeed indicate signs of cognitive impairment was reassuring for me in that it affirmed my own experience. If I wasn't cognitively impaired, where were all these weird symptoms coming from? The new test results didn't really add anything new; they just removed a crazy-making contradiction.<br />The research that I have done on the PET scans for AD indicates that false negatives (ie the test is negative but the patient has AD, anyway) are quite unusual, Given that I've had three negative tests, I no longer believe that AD is the source of my impairment.<br />I'll post about this in a few days, but I'm guessing at this point that the eventual diagnosis will be vascular impairment. I'll see my neurologist at the end of the month and have a better idea.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-74191365432318312472014-01-14T17:15:04.940-05:002014-01-14T17:15:04.940-05:00As far as I know, Lewy Bodies cannot be detected i...As far as I know, Lewy Bodies cannot be detected in the spinal fluid. A spinal tap is an essential part of any medical evaluation for cognitive impairment because it can find other causes of cognitive impairment (such as a brain infection). My understanding is that Lewy bodies are found in brain cells themselves and not shed into the cerebrospinal fluid. If you have any contradictory information, I'd be very interested in getting it.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-26099560946028045692014-01-14T17:07:37.277-05:002014-01-14T17:07:37.277-05:00Phyllis:
Do you have any references for research o...Phyllis:<br />Do you have any references for research or summaries available to the general public on Subjective Cognitive Decline/Immpaiarment?David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-41119676950227120412014-01-14T17:05:49.376-05:002014-01-14T17:05:49.376-05:00A good physician knows that medicine is a very ine...A good physician knows that medicine is a very inexact science. We've begun to understand some things but much eludes our grasp and perhaps can never be within our grasp.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-85401676940853466552014-01-14T17:03:44.790-05:002014-01-14T17:03:44.790-05:00Thanks for an enlightening story from another, sli...Thanks for an enlightening story from another, slightly different angle.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-40099075666650809642014-01-14T16:21:15.911-05:002014-01-14T16:21:15.911-05:00First time commenter here. First, thank you for y...First time commenter here. First, thank you for your openness and honesty in your blog. As my mother starts a cognitive decline, your thoughts and experiences are helpful to me.<br />Second - the information you share about your cognitive testing reminds me of testing of my now-adult daughter during her school years. She was born prematurely and had an intracranial bleed. As a young child, she reached her developmental milestones, but at a much slower rate than her peers. As she reached school age, her dad and I saw significant strengths - her language, her memory and also significant impairments - extreme sensory defensiveness, impaired and slow motor planning, inability to generalize learned tasks from one situation to a similar situation. One set of school testing came back "normal" and the expert said she was a little "anxious." Eventually, with more life experience and later confirmed with another tester, something similar to what your friend found was explained to us. Our daughter had an overall high IQ; her specialized testing in some areas showed great capability and in other areas was severely below average or average. The new experts explained that this did indeed indicate an impairment, and also explained how our daughter was using her cognitive strengths to compensate for or even to mask her impairments. It was particularly obvious in regards to her use of her memory to "remember" how to do something, rather than to learn to problem solve. For example, at age 4 years old she would appear to be able to typically climb into the kitchen chair. However, she had memorized how to climb into that chair positioned just so. If it were a different chair or even the same chair turned in a different direction, she could not figure out how to climb onto it. One expert explained that it was like a person playing a piece of music beautifully on the piano, but having only learned that piece - not having learned the generalizeable skill of sight reading and piano playing. <br />To make a long story shorter - the concept of a higher IQ obfuscating testing results is a very real one in my experience. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-90877798820464108582014-01-14T16:05:46.124-05:002014-01-14T16:05:46.124-05:00Diagnoses are, unfortunately, subjective, even wit...Diagnoses are, unfortunately, subjective, even with the newest PET scans. My husband's glucose and amyloid PET scans seem to point clearly to Alzheimer's, but his primary neurologist still believes he has FTD. He says the PET scans are only accurate about 80% of the time. So, yes, to some extent you do choose who to believe, if only to give a name to what you're experiencing.Pat Japenganoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-30418907898971551832014-01-14T16:02:13.529-05:002014-01-14T16:02:13.529-05:00I find it extremely frustrating that more doctors ...I find it extremely frustrating that more doctors don't have routine tests that they can perform on their patients to diagnose AD. Surely, with the aging baby boomer population heading towards 70 this would be a very necessary tool to have at their disposal!Cathynoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-72315034695114088632014-01-14T15:17:25.247-05:002014-01-14T15:17:25.247-05:00David, how is your short term memory, do you frequ...David, how is your short term memory, do you frequently forget the recent conversations or do you keep asking the same questions?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-28726227707040881302014-01-14T15:02:56.351-05:002014-01-14T15:02:56.351-05:00I'm curious. Is there a link between the diagn...I'm curious. Is there a link between the diagnosis/test interpretation and the level and amount of medical care or medication as covered by a person's insurance? <br /><br />In addition to overlooking the discrepancy in the test interpretation which your friend observed (i.e. your individual normal isn't a standard normal), doctors could be under pressure to be conservative in their diagnosis of MCI and dementia. The inner cynic has been considering that question for a number of posts now.phillyhttps://www.blogger.com/profile/13503702913531713932noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-12515511831170199952014-01-14T15:01:45.712-05:002014-01-14T15:01:45.712-05:00David, given your "unmooring" in August,...David, given your "unmooring" in August, I wonder if you regard this latest news as distressing or reassuring? If we differ in interpretation, I hope you'll forgive me if I take the side of "distressing," being the child of a father who passed away from Alzheimer-related causes three years ago. I would wish that journey on no one.<br /><br />In that spirit, may I remind you that this still does not explain the three PET scans that show no signs of AD? (http://davidhilfiker.blogspot.com/2013/08/whats-going-on.html) So there is still hope (wording from my POV) that there is some other cause of your symptoms? Or do you believe these also might have been misinterpreted, and/or inconclusive?<br /><br />No matter what, my best to you, and thank you for sharing this journey with us.Anonymoushttps://www.blogger.com/profile/05479034703636266209noreply@blogger.com