RSS Feed Print
Do we need a neurologist?
Annietc
Posted: Friday, September 6, 2019 8:56 AM
Joined: 8/8/2019
Posts: 4


Hello - first post so bear with me - my mom is in rage 2-3 of Alzheimer’s - I’m wondering if a neurologist diagnosis is necessary at all? I’ve seen people say it’s good and some say it’s not needed - help?
SunnyBeBe
Posted: Friday, September 6, 2019 9:17 AM
Joined: 10/9/2014
Posts: 701


Did some doctor tell you that she has AD? Just curious why you think that. I'm no expert, though, there are a lot of people on this site who have a lot of information about diagnosis, doctors, tests, etc.  I can say that I had my LO evaluated by a neurologist right after her Primary doctor diagnosed her with significant vascular dementia.  This was based on her history, medical exam, lab tests, history and office mini eval.  She was only 62 years old, so, I wanted to confirm and ensure that it wasn't a brain tumor.  The neurologist conducted tests, including MRI and confirmed the diagnosis.  This was important for us, because, I needed to rule out other causes that might have been treatable.  For me, it was important to know as much about what was causing the dementia as possible. You might also consider that your mother may be entitled to some benefits, due to her condition that she may need a diagnosis for.  I understand that others may take a different approach, especially, if the LO is advanced in age and the affects are not that prominent.
harshedbuzz
Posted: Friday, September 6, 2019 10:15 AM
Joined: 3/6/2017
Posts: 1688


I made sure dad saw a top notch neurologist at a well regarded memory center. It turned out that one of dad's dementias was caused by a vitamin deficiency; his cognition improved for a time with treatment and life style changes. That was the right decision for my family.

A dear friend chose not to. Her mom was in her 90s and had cancer. She felt that was best for her mom and family.
Jo C.
Posted: Friday, September 6, 2019 12:03 PM
Joined: 12/9/2011
Posts: 10043


Hello Annietc and a very warm welome to you.  I am so sorry for what is happening and for the heartbreak it is bringing.  I too had to face this with with my own dear mother and I understand.

There is a very good reason and necessity for seeing a good Neurologist who sees dementia patients as a routine part of his/her practice.  In fact, it is key to everything and managing well into the future.

One first would want to have a good full exam by one's primary care doctor; this would also include having blood labs drawn looking at absolutely everything.  There are many different conditions that can mimic dementia and one would want to rule that out first. Now; if all other causes are ruled out, then it is best to see a good Neurologist.  Our primary care physicians are so good with so much, but they are not on the cutting edge of dementia and that can lead to unforeseen and preventable problems.  There are actually quite a number of misdiagnoses that occur.  This happened with my own mother until we saw a good Neurologist who made the accurate diagnosis and got all straightened out.

A good Neurologist who routinely sees dementia patients is best at making that accurate diagnosis for actual type of dementia.  There are multiple different types of which Alzheimer's Disease is only one.  An accurate diagnosis is crucial and will make a huge difference in treatment and medications.

Some medications for Alzheimer's Disease are contraindicated in other dementias and can make things worse.   We need to know what is at hand and best plan of care as we progress in time.

You will also find that one can see the specialist only once in awhile on a schedule to keep things up to date and well managed.   When the dementia advances, it is good to have that specialist who is highly experienced at managing problematic issues that may arise.

Your mother is blessed to have such a caring and concerned daughter.  You will be her advocate as she will be unable to be such for herself.

Let us know how things are going, we are all here in support of one another and that now includes you too!

J.


jfkoc
Posted: Friday, September 6, 2019 1:15 PM
Joined: 12/4/2011
Posts: 17264


and not just any neurologist....you need one that specializes in  dementia

would you share the protocol used for your mother's diagnosis


Annietc
Posted: Friday, September 6, 2019 11:47 PM
Joined: 8/8/2019
Posts: 4


She was diagnosed by her primary care and a chronic care nurse said she is in the second phase - I’m not using the correct terminology but I’m really stressed - I think she’s venturing into the third level.
Annietc
Posted: Friday, September 6, 2019 11:49 PM
Joined: 8/8/2019
Posts: 4


Thank you for all your thoughts and replies - her primary has said that he is more than happy to refer her to a neurologist and with the feedback I’m getting, I’ll do that on Monday - hopefully with someone who has lots of Alzheimer’s experience!
Jo C.
Posted: Saturday, September 7, 2019 7:15 AM
Joined: 12/9/2011
Posts: 10043


Annietc, you are doing the best things possible for your dear mother.  It often takes a very long time to get an appointment with a Neurologist; all dementia specialists are pretty busy, so if that happens, ask to be put on a cancellation list at the office; then call each day to see if anyone is cancelling their appointment for a day or two ahead or whatever, and grab that appointment.  That has worked for us.  Once your mother is an established patient, it will be a bit easier to get an appointment.

It is important to ask if the Neurologist sees patients with dementia as a routine part of his/her practice.  Neurologists see other types of patients too, so that is not a worry; just need to know if he/she sees dementia patients as a routine part of the practice. Getting an accurate diagnosis for type of dementia is as said before, crucial to good care management and treatment.

A good Neurologist can be a very important part of our healthcare team.   We had our dementia specialist handle all things related to dementia and was the only one we  had prescribe meds for the dementia; our primary care MD managed all other things with health.  This way, we had the best outcomes.

Also, if our Loved Ones, (LOs), are having changes in behavior and/or cognition, and/or function, we find it important to have our LO checked for a, "silent" urinary tract infection.  These UTIs are called, "silent," because there are no overt signs of pain or burning, but there will most often be changes in our LOs behaviors but there also can be changes in cognition or function until the UTI is treated.

When dementia is diagnosed we can often feel fear for the future as well as grieving what is happening.  There is a learning curve for all of us when dementia enters our lives; I am an RN who has spent years as an Administrator of Patient Care Management.  All the education and all the experience made no difference when my LO was diagnosed with dementia; it is very different when it enters one's own house.  I had to fly by the seat of my pants like everyone else and learn.  Read, read, read everything you can; knowledge is power and really makes a difference.

There is a very good and thorough detailed writing by Jennifer Ghent-Fuller, a dementia expert professional; "Understanding the Dementia Experience."  She has permitted us to download this and even print it at no cost.  You can find it at:

http://www.smashwords.com/books/view/210580

Also, this Message Board is an awesome place to gain information and share; it is important to remember though, that many people come to the site because they are having severe problem issues; not everyone's LO has such problems/issues.  The most common saying is; "When you see one person with dementia, you see one person with dementia."   Each person's experience will be different.

I would also like to share with you that the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at, (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are great listeners, wonderful in support, have much information and can often help us with our problem solving.

We are so glad to make your acquaintance and hope that this wonderfully supportive place will be of help and comfort to you.

J.


jfkoc
Posted: Saturday, September 7, 2019 11:27 AM
Joined: 12/4/2011
Posts: 17264


Here is some information on diagnosis. You can google for this also. The more you know the better the treatment will be.

https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

Here is another article which is very important;

https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013


Annietc
Posted: Saturday, September 7, 2019 1:07 PM
Joined: 8/8/2019
Posts: 4


Thank you so much!