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What's Involved In A Diagnosis
Brooke Marie Mae
Posted: Thursday, September 24, 2015 9:45 PM
Joined: 10/18/2014
Posts: 32


I have been reading your input into various aspects of receiving your diagnosis of alzheimers or other dementias. There seem to be a variety of tests and doctors involved in making the diagnosis. In my case my psychiatrist based my diagnosis of early onset dementia on memory loss (blank spots of time) and a CT scan. She has placed me on Aricept which seems to have helped with the blank spots.

I guess what I'm questioning is the purpose of seeing neurologists and other tests. Since there is no cure, what can they add?

Iris L.
Posted: Thursday, September 24, 2015 11:28 PM
Joined: 12/15/2011
Posts: 16642


Brooke, the purpose of doing a thorough medical and neurological evaluation is to rule out the causes of memory loss that are treatable and possibly reversible with medication or other treatment. Usually, an internist or a neurologist is the doctor who can evaluate the patient's history and determine what tests to order and how to interpret the results.

The history will include the family history of any of the dementias, prior history of head injury or brain disease, tests for diseases such as hormonal deficiencies, vitamin B12 deficiency, or other system disease.

Drug history of prescription and non-prescription drugs is evaluated for cognitive side effects. Psychiatric history is evaluated.

Blood tests are ordered. Imaging studies, such as CT scan or MRI are ordered to search for brain tumor or evidence of stroke or hydrocephalus.

Extensive neurocognitive testing will evaluate brain, neurologic and psychiatric function to determine how much of the symptomatology is due to cognitive decline or depression or other psychiatric disorder.

Also, vision and hearing should be assessed.

Evidence of sleep apnea should be searched for.

The working diagnosis of dementia of the Alzheimer's type can usually be made after these tests have ruled out other diseases or identified them for treatment.

In my opinion, a psychiatrist is not able to do extensive medical and neurologic testing to rule out these other diseases. However, a psychiatrist should work with a neuologist because symptoms of depression overlap symptoms of dementia.

In other words, a patient may appear exactly like a patient with Alzheimer's disease, but does not have Alzheimer's disease, but major depression, which can be reversed with aggressive treatment of the depression.

This may need anti depressants and psychotherapy. Because anti-depressants do not work quickly, it may take weeks to notice if there is improvement. Also, a combination of antidepressants may be needed, and the correct dosage must be determined for that patient.

Even after testing and ruling out other diseases, if Alzheimer's disease is suspected, it may take some time to determine that one of the other dementias is not the case. The treatment for the dementias varies, and medications that may be appropriate for a dx of Alzheimer's disease may make a different dementia worse, for example, in the case of a patient with FTD, fronto-temporal dementia.

This is why it is best to work with a neurologist who regularly diagnoses and treats the dementias, because they have the most experience with all the varieties.

In my case I worked with my current neurologist, but I got a second and a third opinion from two university neurologists at an Alzheimer's Disease Research Center. I also worked with a non specialist neurologist, my rheumatologist, an internist, three family practioners and two geriatricians, two neuropsychologists, and a geriatric psychologist, before I accepted my diagnosis of cognitive impairment not otherwise specified. This is where I am today.

I wanted to be certain that I was on the right track.

Iris L.





llee08032
Posted: Friday, September 25, 2015 6:20 AM
Joined: 5/20/2014
Posts: 4405


Brooke,

Also the first full neurological psychological evaluation measures both strengths and deficits which we need to know in order to make accommodations to living with dementia. Also the initial evaluation can be considered a marking point to compared to future evaluations to see if there is progression or not. It is important to know not only what areas of cognitive functioning you may be having difficulty with, your dis-abilities and to know what your abilities are as well. There may be areas of brain and function impacted that you are not aware of. I got a few surprises with visual processing and perception difficulties that I was not fully aware of. As you are already aware it is not just memory loss that were dealing with. It helps to know everything that you can so you can advocate for your care and well as compensate for deficits. Hope you are feeling better!

TheSteven
Posted: Friday, September 25, 2015 7:59 AM
Joined: 10/11/2014
Posts: 167


Brooke, the neuerologists do not have a pharmaceutical cure and their medical organizations are not permitted to recommend anything else either. But like I told Melfrue, don't despair. Many people who have been diagnosed with Alzheimer's have beaten it. I am following Tom Warren's book “Beating Alzheimer's” and have already improved. In my case and many others it was due to mercury poisoning from mercury dental fillings. Low levels of “mercury reproduces all the pathological changes seen in AD” from http://content.iospress.com/articles/journal-of-alzheimers-disease/jad100705 . My blog contains dozens of links to videos and articles about this subject and people who have reversed their ALZ as well as all the books you need to read if you think you want to investigate this treatment as well as other alternative treatments that help. My blog is at http://thestevenalztreatment.blogspot.com/ if you want to check it out.


Mimi S.
Posted: Friday, September 25, 2015 10:29 AM
Joined: 11/29/2011
Posts: 7029


Brooke,

Do you have an appointment? That is a first step.
From your library, get a copy of Doraiswamy and Gwyther, The Alzheimer's Action Plan. The reason for the testing and what to expect will be made clear.

Personally I would not concern myself about mercury and all the other things that supposedly have caused AD. If all these things were true, the percentage of those with dementia would be much higher.

I do think that even more subtypes of dementia will be found and that multiple causes will also be found.

Do let us know you were able to get an appointment at a good diagnostic center. The ordinary GP is not equipped to make such an assessment.

Mimi S.
Posted: Friday, September 25, 2015 10:59 AM
Joined: 11/29/2011
Posts: 7029


Oops, I just glanced again at your post.

You were partially, but, in my opinion, not fully diagnosed. Go ahead and try to get an appointment at a good diagnostic center. Your records can be forwarded to them. More needs to be done!

Brooke Marie Mae
Posted: Friday, September 25, 2015 11:09 AM
Joined: 10/18/2014
Posts: 32


No I don't have an appointment. Things work differently in Canada. To get an appointment with any of these specialists I would need to have a referral from my psychiatrist. She doesn't feel anything else is needed at this point. To get a referral to another psychiatrist I would need a referral from my family doctor. As there are only 2 psychiatrists in town and they are super busy they make a point of not seeing the other's patients. The closest city who would have any of these specialists or psychiatrists is 6 hours away driving through a mountain range (and winter is almost here).

The CT scans that I've had show that my brain is shrinking in all areas except the part that handles eye sight. Maybe once it shows shrinkage it is a sure thing that it's caused by dementia.

Iris L.
Posted: Friday, September 25, 2015 4:05 PM
Joined: 12/15/2011
Posts: 16642


Brooke, did your PCP do any evaluation for you? Any blood tests for low thyroid or low vitamin B12 level?

Are you on any medications? You can check your own medications for memory side effects on www.rxlist.com.

We have to work with the medical system we have. It may be that your medical history is unremarkable.

Are you working? What has your psychiatrist advised you about work? Do you have a disability program similar to Social Security Disability Insurance in Canada? Is it time to apply for benefits?

Sometimes we have to go with a working diagnosis for a while and assess the response to treatment. You can use this time period to make plans for yourself.

Iris L.



alz+
Posted: Friday, September 25, 2015 6:32 PM
Joined: 9/12/2013
Posts: 3561


Brooke - How are you doing?

Just checking in. Think about you often.

If you have brain scans showing brain shrinkage, and Aricept helped, that is more than a lot of people have their diagnosis based on.

Does it help you to accept this diagnosis or is something telling you to get another opinion?

Love to see when you post and hugs to you. Leaves turning?


Mimi S.
Posted: Friday, September 25, 2015 7:17 PM
Joined: 11/29/2011
Posts: 7029


This is the second post that I responded to this morning and it's not there.

My opinion: You have a partial diagnosis. Not good enough! Call the help line:1-800-272-3900 and get the # of a few of the best in your area. Be willing to travel and even stay over for the best place. A University or Major teaching Hospital with a dementia unit is usually the best.

I'm answering as a person with AD. Do get a copy of the book, from your library, that I recommended above.

The_Sun_Still_Rises
Posted: Friday, September 25, 2015 7:49 PM
Joined: 7/24/2015
Posts: 3020


Brooke Marie Mae wrote:
I have been reading your input into various aspects of receiving your diagnosis of alzheimers or other dementias. There seem to be a variety of tests and doctors involved in making the diagnosis. In my case my psychiatrist based my diagnosis of early onset dementia on memory loss (blank spots of time) and a CT scan. She has placed me on Aricept which seems to have helped with the blank spots.

I guess what I'm questioning is the purpose of seeing neurologists and other tests. Since there is no cure, what can they add?

----------------------------------------------------------------------------------------------------------

SOME dementias have cures, and treatments...some are not fatal. It is helpful to know that, but also hard to hear (again) if it is.

They need to rule all those things out.

They can also tell, maybe, what type it is...which might allow you access to other organizations and more information about those specifics.

They can also put you in touch with any trials going on that you might qualify for.

It is just part of the process. Hang in there.


Brooke Marie Mae
Posted: Friday, September 25, 2015 8:59 PM
Joined: 10/18/2014
Posts: 32


Hi, Always good to hear from you. I actually have accepted my diagnonis of early onset dementia (probably alzheimers). Not happy about it of course but accepting. At this point I'm still highly functional but am noticing little things - tonight I poured boiling water over my hand for the third time, as I overfill the measuring cup.

Am heading out to Texas tomorrow to visit my youngest son and his family. Need to get as much family time in while I'm able to travel on my own.

Talk again soon!

Iris L.
Posted: Friday, September 25, 2015 9:25 PM
Joined: 12/15/2011
Posts: 16642


Bon voyage, Brooke!

I hope you are able to get online while you are visiting your son and his family.

When I was with the geriatrician, he told me I should think about relocating closer to my family. I told him I was doing fine. He said to think about the future. So, I am saying to you, Brooke, think about your future. Where do you want to spend your time?

Have you thought about power of attorney and other legal matters?

You probably still have many good years left. Enjoy them.

Iris L.

The_Sun_Still_Rises
Posted: Saturday, September 26, 2015 5:20 AM
Joined: 7/24/2015
Posts: 3020


Brooke Marie Mae wrote:
Hi, Always good to hear from you. I actually have accepted my diagnonis of early onset dementia (probably alzheimers). Not happy about it of course but accepting. At this point I'm still highly functional but am noticing little things - tonight I poured boiling water over my hand for the third time, as I overfill the measuring cup.

Am heading out to Texas tomorrow to visit my youngest son and his family. Need to get as much family time in while I'm able to travel on my own.

Talk again soon!
-------------------------------------------------------------------------------------------------------
Shrinking is generally Alz. Aricept (and that family of meds) are the only things we have (so far). I hear you about Canada. Many drs feel that they only need as much as they need to rx you meds...which you got.

Thinking, maybe when in Texas, you can take a ride down to Mexico and see someone there? Of course, you can always see someone in TX too...just that many here run to Mexico for care, esp if in states near the border.

They cannot REALLY dx anything until death...which is why all reports will say "probable."

Acceptance is a hard one...I find it tempered by embracing my new life with dementia. By realizing that I am still here, and I still have worth as a human...and that I can still contribute to the world. But yeah, it takes a while to get to that point.

Hang in there, have a fun trip...and enjoy your visit.


Mimi S.
Posted: Saturday, September 26, 2015 11:15 AM
Joined: 11/29/2011
Posts: 7029


QUESTION WAS ASKED WHAGT A NEURO-PSYCH CAN ADD.

It is a necessary, not optional, part of a good diagnosis.

Alzheimer's is the most common form of dementia, around 80%. What if you have one of the other 20%. Some of the drugs given for Alzheimer's not only are useless, but in some cases may do harm.

The way folks with different dementias are treated in the early and mid stages should vary depending upon the diagnosis. The neuro is currently the best way of distinguishing between the many types and also screens for depression. Symptoms may be caused simply by depression, although depression often coexists with dementia.

And a lot in addition to meds can be done. We need to think about our life style. Much can be done to alter certain parts of our daily living, so that, in fact we can greatly lengthen our stay ion Early Stage.

Several of us on these Boards, especially Iris and myself have been proclaiming the benefits of Best Practices for years. We have bemoaned the fact that the medical profession and the Alzheimer's Association have not latched on.


The other day I got an e-mail from the Association with several links. A new chart with an expanded Best Practices was there.

I'll try to copy and post. If I succeed, somebody please pass it on.

Mimi S.
Posted: Saturday, September 26, 2015 11:20 AM
Joined: 11/29/2011
Posts: 7029


Ten Ways to Love Your Brain.

Expanded Best Practices

Iris L.
Posted: Saturday, September 26, 2015 2:26 PM
Joined: 12/15/2011
Posts: 16642


Mimi, this did not copy as a link. Do you have the web address?

Iris L.