Neuropysch tests

Janutt

Hello,

I was curious about how often do you have/get a neuropsych test done? I had one done a year ago and now I need to have another one in a couple of months. I am not a big fan of these which stresses me out. This one is going to be 4 hours long. Does this show changes from the others?

Iris L.

Janutt, the purpose of testing over a time period is to document decline in different cognitive areas. You should receive a thorough report. Any possible reversible causes should have been treated.

If this is your second test after about a year, I think it will be a good idea. My second test showed decline in some areas and no changes in other areas. Now, every couple of years, I do Neurotrax which is computerized cognitive testing. My Neurotrax show deficits, but the deficits are apparently stable deficits. Meaning, I am not getting worse on the testing. Try not to stress yourself.

Ask the neuropsychologist what the finding mean for you. Ask what accommodations you could make.

Janutt

Hi Iris,

thank you. I know I shouldn’t worry about it too much and it’s to help like you have mentioned if there are any declines or stability. The fear of the unknown.

Iris L.

Janutt, the use of this time is to make accommodations and to do other things to make your life easier. Seek out these things. Then your life will be more comfortable. I have to go out now, I'll write more later.

Iris L.

I'm back. One of the precepts of Best Practices is continuing to socialize. So I have found a new group of friends that I socialize with. We had a nice pot-luck lunch and played games. My other friends abandoned me.

As far as having dementia, I think it is very important to develop a philosophy that makes sense to you. This is what will keep you going, because there will be many depressing times that will make you want to give up and crawl into a hole. Janutt, you mention fear. What are you fearing? Think about the fear and dissect it. I learned this from one of our emeritus members, alz+. What you fear, you can accommodate or compensate for. Do not let fear run your life!

Iris

Janutt

Hi Iris,

Thank you,

I guess the fear of the unknown is what is going to happen next. Do you know or realize or even when you have progressed? Yes, my friends have abandoned me as well although I never had many since life is always busy for everyone. I understand the world doesn’t stop for me. I’m no exception to this so I’m not worried about that.

that’s nice to have new friends to get out and enjoy the company while having a potluck meal. My family and I will try to get together and play games as well. I do enjoy backgammon and Yahtzee. Numbers are getting harder for me but I do have help with that.

the neuro psych test scares me like am I going to do bad on this or am I just “pretending” when I’m not. My old neurologist said I was that’s why I commented that. Do I really have early onset Alzheimer’s? I know I do due to the testing but you know denial sometimes creeps in.

Amy Joy

Hi everyone!

hope everyone is doing well!

I understand what it’s like not wanting to get tested.

I was told it’s better to know then you can start to plan.

When I found out I was embarrassed and didn’t want to believe it and didn’t want anyone to know I was afraid of being judged.

I am due for re testing and new medicines soon.

I stay positive and hope to get better.

good night

BadMoonRising

I'll be going in next month for an annual neuro exam during which I will receive the relatively short, Montreal Cognitive Assessment. I still remember the date of last year's appointment because I was so darn nervous I kept reminding myself of the date before I left the house. What I did not anticipate was the anxiety that flared up when my mind momentarily went blank. With a little reassurance from my doctor, I was able to accomplish the tasks. Meanwhile, I have memorized the date for my next appointment. ;) Would I be nervous before a 4-hour test? You betcha! I'd be taking slow, deep breaths all the way to the practitioner's office. Do whatever works best for you. Wishing you the best.

Janutt

Thanks!

I am not stressing about it right now but hopefully I continue this process because I did panic the 1st time and I didn’t do as well as I wanted to but due to circumstances it’s understandable. I did do another one last month a mini one and I again didn’t do as well for my age. I know this may sound silly but I am glad to know it’s not me and it’s actually something but again it is not what we all wanted in life. I do hope the 4 hours goes by fast.

Amy Joy

Hi badmoonrising!

Welcome!

I’m sorry to hear about your struggling.

I hope your test goes well.

Have you been diagnosed yet?

How are things going?

I was in my late forties when I started showing signs of memory loss and mental decline.

my doctor did many tests

I have a family history of dementia.

I was diagnosed with early onset dementia at 49.

I now depend on writing things down when I have to go to doctors or I can’t remember what was said.

Janutt

Hi Badmoonrisising,

I wish you luck as well don’t stress about it either. Have you been diagnosed with dementia or something?

BadMoonRising

I'm sorry I missed these posts. If it's o.k., I'm going to assume going forward that y'all won't hold it against me, since we all have similar "issues". 😉

I joined the board in 2017 after I had participated in the IDEAS study. However, it was in 2011 when I initially received a diagnosis of Amnestic Disorder, NOS (along with ADHD, Depression, etc). I was 59 at the time. I sought a second opinion with an expert, he reassured me I was o.k., so I let it go...until 2017. I don't recall what event triggered my desire to seek a second eval, but I underwent another 2 day neurocognitive evaluation at age 65. The results were both ridiculous and horrible. I then saw a new neurologist who was certain I did not have AD, but enrolled me in the study at her staff's insistence. Result: Very high load of Amyloid on the PET scan. The doc changed the diagnosis from normal to "MCI due to AD". I jump back on the forum when something happens that scares me and I need a safe place to share my fears, anger and occasionally, knowledge.

Janutt

Hi BadMoonRisisng,

I am going for my 2nd neuropysch test this coming Tuesday. I too had a neurologist who said that I had functional neurological disorders and that I was faking this. I did have pet scan, and Csf a couple of times and each time they both came back positive for amyloid too. I now have been seeing a new neurologist now. I get so scared and confused as well. I have family members who don’t believe me even though they have have experienced it with their parents I do check this site often so hopefully I will hear from you soon. Just breathe. Lots of emotions happening

Janutt

Hello,

well I did have the neuropysch test/exam. I liked the people who were there to do the exam. The doctor explained the test was like having an mri and she went on to explain how they explain to you not to move because it would interfere with the mri well this is different from the test it’s more just like how “we” function. I did remember some stuff and other stuff I had no idea that it was even shown or talked about. I’m okay now. She does think I may not need to do another test again. I’m not sure why but she explained why. Didn’t understand why

Iris L.

Now that you have the neuropsych results, what is your next step, Janutt?

Iris

Janutt

I am not sure honestly. The dr who did the test said there is no need to have anymore at this time. I have been diagnosed with EOA, strokes, brain aneurysm and FND.

I have questions now thinking about it. I have a virtual appointment in a few weeks. So I guess I can ask them.

Iris L.

Janutt, you have a complex neurologic history. I had to look up FND because I had never heard of it before. Functional neurologic disorder used to be considered a psychiatric conversion disorder. You state that your PET scan and spinal fluid show evidence pointing to early onset Alzheimer's Disease.

If I were you, I would spend time to determine exactly what is to be expected with each of these conditions, as far as signs and symptoms. Consider the various treatments. See if the medications used conflict with one another. Read about nutritional and exercise guidelines.

Write down what symptoms bother you and what treatments you are doing. Then you can be better prepared to address the doctor about your next steps. Can you expect treatments to stabilize some of your symptoms? What is the prognosis for each condition?

In the meantime, read about Best Practices and adapt to your conditions. Also think about your financial needs and resources. Think about getting your legal affairs in order. There is a lot to think about and to do. Please keep in touch.

Iris

Janutt

Iris,

thank you for your reply. Yes,I have a complex neurological disorders. It’s frustrating to say. Yes it is functional neurological disorder and it was called conversion disorder, but they changed the name due to stigma. I also have suffered from strokes, a brain and spleen aneurysms , and also I had a heart attack caused by spontaneous coronary artery dissection. All of these happened within days to weeks of each other. It has been very frustrating. I was told by my new neurologist who deals with Alzheimer’s that the other health issues will kill me before Alzheimer’s will.

I have made arrangements for a will before this all took place because my husband was diagnosed with mesothelioma lung cancer a few months before I suffered from all of this. This was all done in May 2021. He is doing better. They caught it so early that he is the first person to have it so early and be detected

I eat very healthy. I wouldn’t be a candidate for bad health at all. I was a runner, did daily yoga and I am a pescatarian who eats salmon. I do eat lots of healthy foods I never had any health issues until all this happened. It’s been a domino effect

if I had anything wrong with me I would try to “fix” the issue such as getting massages, meditating and whatever else I could do to improve my health

so when functional neurological disorder was a diagnosis I was like what!!!! Alzheimer’s disease I guess I could handle that better than that. I hope this makes sense

my biggest issue is memory then hallucinations and speech. I will post here and later on days later I will completely forget that I posted this.

I have been following Wendy Mitchell and have listened to Mel robbins for.

thank you again for your help. I have written these down to discuss with my doctor

i am not on any medication for the FND only medicines I’m on are vitamins, metoprolol for the heart, high dose of aspirin because of the aneurysm and strokes and donezipil.

Iris L.

Janutt, your healthful lifestyle is probably what got you through all of your sudden health challenges. You are a testament to healthful living and Best Practices! Massages and the like go along with helping to reduce stress and to keep the body strong, they are not intended as a "fix".

I hope your DH is doing well after his cancer.

I can post and a few minutes later I can't recall what I just posted about.

Exelon patch, which is like donepizil/Aricept, helped me a great deal with my speech as soon as I began using it.

IMO, I don't like that functional diagnosis.That is for people without pathological changes in their bodies, hence the term "functional". Obviously you have cardiovascular pathology. I wonder why you were not diagnosed as having a vascular dementia? Vascular dementia is the dementia that may be modified by scrupulous attention to cardiovascular health.

Nevertheless, here is something to consider. There are over one hundred causes of dementia. Doctors cannot be 100% certain without a brain biopsy or after autopsy. So they make a diagnosis as best they can. The main thing is to know what medications to avoid, because the usual Alzheimer's medications may make FTD and some other dementias worse. The courses may vary to some degree, but the prognosis is the same. There are many people who appear to have Alzheimer's Disease, but their course is not the usual, as in Wendy Mitchell.

Keep up the good work! Post when you can and let us know how you are doing with the hallucinations.

Iris

Janutt

Hi Iris,

thank you for your reply. Yes I have always been active and healthy. When I knew my father, his siblings and mr grandparents had health issues I thought I would try my hardest to be as healthy as I could be. Unfortunately, it doesn’t work out that way sometimes but like you have mentioned it has helped me tremendously.

my DH is doing well thanks. He goes for his scans when required.

it is interesting that you have mentioned the vascular dementia because I did have a “fellow “ neurologist say that I had dementia and said there is no treatment for it so no medication is needed. They did consider vascular dementia because of the cardiac issues but the pet scan and csf showed positive for the tangles and such

thank you for all the information you have provided me and I am sorry if I was being frantic. I have been working very hard to improve myself with my walking and speech. I thought the aricept helped me some

we will see what’s next. I too am concerned about what is the difference between EOA and FND since they “both” have memory issues. I am always saying to the doctors and when I take the neuro pysch test that this isn’t me. I don’t talk this way or whatever

I wrote down the questions you had suggested because I never know what to say

I actually thought I had posted earlier but I guess I forgot.

so far the hallucinations have seemed to settle down some. I was talking to one of son’s explaining how it feels to be what I feel like

Iris L.

Janutt, you don't have to explain or apologize for feeling frantic or for any other feeling. Your feelings are natural and you will have many and they will change. The important thing is not to become overwhelmed by your feelings. Feelings are fleeting.

I'm glad the hallucinations are calming down. You already know that the hallucinations are manifestations of brain synapses malfunctioning.

I was in a deep depression in earlier years. What got me through mostly was communicating with the members on these boards. I had to learn and be supported by people who knew what I was dealing with, because they were dealing with the same fears and troubles. We cannot fight this alone! We need each other!

Iris

Janutt

Hi Iris,

Again, I thank you for your support and help. Feelings have been overwhelming for me at times lately. I guess it’s part of this process. I don’t get upset as much or as long. I totally agree with you. We need support from each other who understands what we’re going through. I haven’t gotten to the whoa is me or depressed about it because so much has happened between my DH and myself that I’m just grateful.

Iris L.

Good for you, Janutt! Another very useful principle that I learned from Mimi S, an emeritus member, is this: "don't focus on what I can't do, focus on what I still CAN do." This has served me well.

Iris

Janutt

Iris,

yes! When I was in nursing school my professor used to say to us in the beginning was to “fake it till you make it” I have heard this saying by many professionals in their earlier years of study and they too have lived by this as well. Always say never but always say will try or can’t into can do!

thank you!

Janutt

hello,

I just wanted to post an update. I received a call from my neurologist the other day with the answers I had asked about the results of the neuropsychology test. Well, I do not have (FND) functional neurological disorder. My results have shown that I have declined since the 1st test I took a year ago. Also, my children are still at an increase risk of EOD, but no % of what or when. I do not need extra care at this time. Which I agree.

BadMoonRising

Hi, Janutt! I'm sorry to hear that you have declined since last year; but it is good news that FND has been ruled out. It's one less thing to worry about. As for the kids, I truly believe that there will be a treatment available in the near(ish) future that will enable them to avoid dementia, even if it turns out they're carrying "bad" genes.

It's going to take a while for your mind and emotions to get a handle on what is and isn't happening in your brain. Relieved to have an answer? Err...maybe? But heart-pounding scary to have THAT answer, eh? I honestly do not know if the underlying fear will ever go away once the tests have confirmed your worse fear. Perhaps if there is a real treatment for the damage that has already been done? I just don't know...

Iris L.

Janutt, I'm sorry to learn that you have declined. Are these results from the same test you took in late June? I had to review this entire thread regarding your complex neurological and cardiovascular history. It seems that the neurologist is leaning toward a diagnosis of Alzheimer's Disease. I'm glad you don't need help at this time. Are you making plans for the future? Iris

Janutt

Hi BadMoonRising,

Yes, I am so happy to not be diagnosed with FND. I am grateful it is one less thing to add to my plate. I had always tried to take care of myself. Eating right, exercising (I love to exercise) avoiding other stuff as well. I am not overly concerned about the decline. Idk why this is. I am making the most of my time with my loved ones so, I don't want to rain on anyones parade. I just want to have as much and laughter as I can. I don't feel extremely lost but there are days, many that I have no idea what is going on.

I agree that there is new medications out and some day our children will have the advantage of advanced & new treatment maybe a cure! than myself.

Iris,

Yes, I have been diagnosed since 2021. I think when I had the 1st test the tester was biased from reading the notes from my old neurologist. That neurologist was not nice. She knew it was dementia back in 2021, but thought I was lying still and did not believe the lumbar puncture results. She only believed what she thought and no-one else's diagnosis. What a shame. Yes, this is the one i took in June of this year. I agree I am grateful for not needing help now.