yesterday my husand had a new nerologist who told me that he is not 100 percent sure that he has alzheimers.i told him that he was diagnosed by his previous neorologist that he has alzheimers. the new doc said that they never can realy know for sure. but by all the testing my hasbund seems to have alzheimers.i dont know what to believe now.either he has it or not.i think he does have by all his symptons

Sharon, I am sure this news was rather disconcerting, but it is really a matter of semantics.

No doctor can ever be 100% sure someone has Alzheimer's because the only definitive test is a brain biopsy. For obvious reasons, we don't do those on living people.

So Alzheimer's is what is sometimes referred to as a "rule-out" diagnosis. The doctors rule out everything else it could be, and then if the symptoms fit, they make the diagnosis. Some doctors speak with more certainty at that point than others who like to hedge their bets. (I am assuming that the first neurologist did a thorough workup to rule out other causes.)

Personally, if it walks like a duck and quacks like a duck, chances are that it is a duck.

Take good care of your hubby and yourself!

Did he indicate what he was thinking if not AD? Does he have the records from the previous neuro? On what did he base that statement? Wow. This must be very confusing for you.

my husbands former neurologist as well as his reg doctor both diagnosed him with alzheimers. now this young neirologist tells me thats its not 100%sure,i tend to go with the original diagnoses

Well,,,you should call that young pup medical nuerologist and ask him ,,,,"Just what is it that you think "IS " wrong with my husband if not AD?????

Any and everyone knows that the only true way to know if its AD is when the person dies and has an autopsy to show the brain.

Could it be that your hubby has NPH,,where its fluid on the brain thats causing all of these symptoms mimicking AD?

And I'd ask this new young Dr what makes him feel that he know's more then your husbands other drs that diagnosed him. Sometimes,,some of the medical Drs that are just done with their residency act like they know alot more than the Drs that have been practicing for years.

Go with you gut on this one,,but find out why Mr new Dr thinks what he thinks,,then ask him for proof! Keep us posted. Peace

quote:

Originally posted by sharon flora:
my husbands former neurologist as well as his reg doctor both diagnosed him with alzheimers. now this young neirologist tells me thats its not 100%sure,i tend to go with the original diagnoses

Like someone else said, one can never be 100% sure of an AD diagnosis in a living person. Does he want to run some tests to rule out other things? It's possible that one of his prior doctors made a mistake or didn't rule out other causes sufficiently. Younger/newer doctors lack the experience that older docs have, BUT, new doctors definitely know all of the latest and greatest.

Could also be that young doctor is remembering too much of his "legal" course. Of course they're not 100% sure, but you don't keep throwing that out there unless you're (1) trying to figure out what else it could be or (2) you're covering your a** and in his case covering it unnecessarily.

I'm sorry for the confusion it has caused. Unless he has given you some reason to think he wants to do more or different testing I think I'd just go with Yeah - there's not much that is 100% certain, including the diagnosis of Alzheimer's.

Geez, I'm not 100% sure either. Don't get me started on these people.

I'm sorry that the doctor turned the tables on you, sharon flora. On the other hand, how wonderful would that be if it were true?! Definitely find out why he said that, like maybe he is going to do more testing in case something really was missed earlier in the diagnosis process. It's been known to happen. If you're uncomfortable questioning him, talk to your PCP and have him address it with the new neuro.

quote:

the new doc said that they never can realy know for sure. but by all the testing my hasbund seems to have alzheimers.

Unfortunately there is no test that positively diagnoses alzheimers. So If everything is consistant with alzheimers, and there is nothing to suggest something else, then the diagnosis is "probable Alzheimers". Conventional thinking is that the only sure way to diagnose alzheimers is post mortem, when an examination of the brain shows plaques and tangles.

It is unfortunate that the new neurologist was saying things consistant with this diagnostic theory that put doubt in your mind. Doctors need to know how to phrase things so people understand the situation.

Clinical diagnosis of Alzheimers is considered to be 90 to 95 percent accurate. Of course the 5-10 percent inaccurate show dementia, but may be a different type.

The practical issue is whether or not the uncertainty about AD affects the treatment. There are a few causes of similar symptoms that have very different treatments. For example, if there's a little bleeding in the brain that's causing pressure, this can be corrected with a procedure. OTOH, from what I've read, most of the same basic drugs (such as Aricept) are effective for both Alzheimer's and Lewy Body Disease -- maybe some other major diseases too. But Haldol and similar anti-psychotic drugs can be fine for Alzheimer's but terrible for someone with Lewy Body Disease.

So it seems as if the main questions have to do with "OK, doc, what's the next step? Are there more tests to be done, to rule out conditions that would call for very different treatment? What's the best treatment now? And are there any medications we should avoid just in case it's not Alzheimer's?"

I just want to add that one of the big challenges of becoming a caregiver to someone with memory loss is the sheer unpredictability. On the one hand, we can guess what might happen if worst comes to worst -- but we don't know if it will. Our LO might die from something else long before that, and/or our LO might hold steady at one level for much longer than the average.

Then there are the day to day variations. Two good days in a row? They have nothing to do with what you wake up to on the third day.

In this sense, caregiving is a great wake-up call to a clearer awareness of reality. People who believe life is mostly predictable and controllable now seem to live in a different world than we do. And it's a big opportunity for growth, even if it's one we'd like to be able to refuse.

So the new neurologist's uncertainty is just the tip of the iceberg. This whole caregiving business is chock full of uncertainty.

I'd like to comment on what the new neurologist said from my perspective as a formerly practicing pediatrician, a current cognitive patient, and someone who has learned a lot about Alzheimer's disease from reading the Caregiver message boards.

Just about every written material on Alzheimer's disease begins by stating that the only way to be absolutely certain of the diagnosis is by biopsy of the brain. My impression is that the doctor was thinking that, as the wife of an already diagnosed patient, you are well aware of that fact. His statement was not a plan for further testing, but in fact the exact opposite. It was a reassurance that all the testing has been done. The only other thing to do would be a brain biopsy, and of course you are not going to do that.

The doctor probably says this to all his patients. What was meant to be reassuring was instead confusing and upsetting. The doctor didn't think that you might have taken his words as a glimmer of hope for a different diagnosis. The doctor should know this. The doctor should be clear and unambiguous in his communication.

Feedback is in order. I would suggest that you bring this to his attention and let him know how you feel. Get him to clarify. It can be a teachable moment for the doctor to help him improve communication with his other Alzheimer's disease patients and families.

Iris L.