Looking for Support: MCI Diagnosis with Normal Test Results at 51

keep_hope_alive

Hi everyone. I'm looking for others who might have gone through something similar. I'm 51 and recently received a diagnosis of mild cognitive impairment (MCI) after experiencing memory issues, headaches, and possibly some minor balance issues.

Given that my mother has Alzheimer's (I'm her primary caregiver), this diagnosis has naturally caused me concern.

Here's my testing journey so far:

• Initial neurological screening showed MCI
• Beta amyloid ratio and p-tau 217 blood tests: normal range (suggesting not Alzheimer's)
• Brain MRI: mostly normal, with "few scattered T2/FLAIR hyperintense foci in the white matter" (neurologist isn't concerned about this finding)
• Sleep EEG: normal
• Vitamin B12: normal
• Syphilis: negative
• Ammonia level: normal
• Sleep study: scheduled (though I don't have typical sleep apnea risk factors)

I do deal with significant stress as my mother's sole caregiver, and I've had persistent sleep problems. What's puzzling me is that while I've had these ongoing issues, the cognitive symptoms only began about six months ago.

I did have a relatively rare diagnosis show up around the same time: pulsatile tinnitus, which is a condition in which you can hear your heart beat in your ear.

I'd be so grateful to hear from anyone else who:

• Was diagnosed with MCI but had normal test results
• Found underlying causes for their cognitive issues
• Has experience balancing caregiving with their own health concerns

Thank you for any insights or experiences you can share. It helps to know we're not alone in this journey. 💜

Iris L.

Welcome. Read about leukoairiosis and see if this might apply to you.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/226692#Comment_226692

thank you. I saw this and asked my neurologist about the t2/flair hyper intensities. He said “T2/FLAIR hyperintense foci is the new term used for small vessel disease. It is changes in the white matter due to small vessels clotting off and causing little strokes. Clinically, it has very little significance in most cases. If you have a lot of white matter disease it can indicate risk for larger strokes.”

So I’m not sure if I had too few to be considered for this condition as he didn’t bring it up?

But I’m having symptoms caused by “something”.

It seems like this is a vascular issue and so is pulsatile tinnitus in most cases. I’ve got a referral in to see an interventional neuro radiologist so I hope that gets pushed through soon.

alm6168

https://alzconnected.org/discussion/71016/looking-for-support-mci-diagnosis-with-normal-test-results-at-51

I had a neuropsych/cognitive test and determined I had MCI. Saw a neurologist and my blood tests and MRI came back without anything significant. He sent me for a PET scan which revealed the signs of AD. Like you my symptoms are very mild. You may want to have your physician order a PET scan to see if there is AD for sure. Good luck to you. I know it's very frightening.

Iris L.

KHL, if you are having symptoms, then your MRI findings are clinically significant. White matter disease may be new to researchers, but we patients are and have been dealing with it for years. I have white matter changes. These are due to cardiovascular changes so it is very important to maximize cardiovascular health. In my particular case, I have anticardiolipin syndrome, which causes mini-clots. My rheumatologist suggested that anticardiolipin syndrome was the etiology of my cognitive symptoms. I also have been dealing with hypertension for years. Keeping blood pressure at a good level is very important.

We cannot go only by what our doctors tell us. We have to research for ourselves and educate ourselves, and then learn what we need to do.

A PET scan searching for amyloid is a good idea also. You need answers.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/226768#Comment_226768

Thank you so much for this. I’ve actually been healthy for much of my life as a marathon runner, and as a health coach. So my blood pressure has typically been good, lowish even.

However the past few years of caregiving stress for my mother, who has Alzheimer’s and a terminal vascular condition, plus my personal stress due to an assault, have been high. I also have another medical condition that causes weight gain and worsens with stress, as well as had some injuries, so I also gained 35 lbs. For the first time my blood sugar and ldl cholesterol left the ideal range and I also had elevated ferritin levels, which can show inflammation.

I have now lost 23/35 lbs I gained and am regaining my health and life despite still caregiving. My LDL is now just outside the ideal range but my blood sugar has normalized. I had wondered if the past few years had screwed up my health more than I knew. I feel a little disgusted if I could be healthy much of my life and have a few bad years now set me on an irreversibly bad track.

Is a PET scan dangerous? I wasn’t sure about the radiation exposure. He gave me beta amyloid ratio and p-tau 217 blood tests, which I’d read was 90% as accurate as the pet scan and spinal tap, so wasn’t sure if a pet scan was still necessary. I suspect something vascular due to the pulsatile tinnitus happening as well.

I’ve also had some falls though I can’t conclusively link them to this; I didn’t used to fall.

keep_hope_alive

https://alzconnected.org/discussion/comment/226746#Comment_226746

Thank you so much, which blood tests did you have done that came back clear?

That is worrisome to me. The neurologist I saw gave me the beta amyloid ratio and p-tau 217 blood tests.

I haven’t seen a neuropsychologist - what does that entail? I just did a SLUMS cognitive screening with the neurologist and did not do well. I asked him about a memory issue on my own accord due to changes I’d noticed myself.

Iris L.

KHA, I have had two PET scans, they are not dangerous.

What were the results of your p-tau 217 and beta amyloid ratio tests? None of these tests are diagnostic in themselves, an experienced neurologist must put all the results together with the patient's clinical presentation (signs and symptoms) before making a diagnosis.

If you have not been evaluated by a neuropsychologist, you are missing a large part of your evaluation. The SLUM and other mini-mental tests are screening tests, to point to a need for further, more extensive testing.

You cannot say yet that you are on an irreversible bad track. Keep investigating and improve what can be improved, health-wise.

Caregiving stress can cause cognitive changes. Work on ways to relieve your caregiving stress.

Read about fall prevention in older adults falls are common. Could you have Parkinson's Disease? Are you diabetic or pre-diabetic? Why is your ferritin elevated? Work on correctable changes.

That's all for now.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/226830#Comment_226830

Thanks so much for this. The p-tau 217 and beta amyloid ratio tests both came out in the normal range, meaning unlikely to have Alzheimer's. All the other tests have come out normal as well. It sounds like the baseline testing has been completed, I'm not sure what else they may want to test.

I'm not sure at what point the neuropsychologist may be appropriate, or do I need to ask for a referral to one?

I'm getting a sleep study done; the neurologist may also be waiting on the results of that to suggest any further action. I read that sleep issues can cause cognitive issues as well. Which I do believe, but I've had the sleep issues for many years, I'm not sure why the cognitive changes would have just been recent.

Still, I've also been proactive about the sleep study for my long-term sleep issues. They suspect I have a circadian rhythm disorder and I haven't been able to find a specialist whom is covered by my insurance that can help me, which is why it's gone on for so long. I also have done things to start relieving my stress as a caregiver and otherwise. And joined some activities to break up the isolation I've felt since moving back here.

I don't know that I have Parkinson's disease, but I didn't use to fall. I'm not diabetic or pre-diabetic, though I did have a couple labs come back in the pre-diabetic level during the couple of years I gained weight and had the health decline. It was always normal before that and has returned to normal now that I've lost most of the weight I gained and made some other changes.

My LDL now is the only thing that is still above range but only 6 points above normal. It may be normalized by now as that was the result back in July. It also was always normal/optimal before I had the recent health decline, and I was surprised to find it otherwise. But then, not really, in the big picture of what was happening at the time.

It was never discovered why my ferritin was high, but I suspect the weight gain because that has also normalized now that I lost weight. I'm Asian American so I can't carry a lot of extra weight and I've read that people of Asian descent can get problems at lower BMI's than Caucasians as a result.

Are there other tests you might suggest?

Iris L.

KHA, from reading what you have written, nothing jumps out as being out of order. The diagnostic process, which you are doing, is to search for correctable causes of memory loss. Whatever you have found, even if seemingly minor, try to work on getting it back into normal levels.

Alzheimer's Disease is not usually associated with headaches. Stress can cause headaches, although of course there are other causes.

Caregiving stress can impact circadian sleep. Since MCI was already diagnosed, it would be worthwhile to undergo extensive neurocognitive testing of the different cognitive modalities. Then you will have a baseline for future testing. Dementia is only diagnosed after there is a decline over time. In six to twelve months, you can repeat the testing, if you believe there are more changes. Be sure to make efforts to relieve stress!

The other steps I would suggest would be to follow Best Practices. These lifestyle habits may improve your functioning and may prolong the early stages.

Are you working outside the home? You might have too much on your plate. Are you making a Plan B for your mom's caregiving? Be prepared.

Iris

keep_hope_alive

Well, I can say the level of stress has been extreme. I’ve been the sole caregiver for my mother for over 12 years. But her condition slid down rapidly after her brain was attacked by the shingles virus (herpes varicella, which I’ve read herpes has been implicated in some case of dementia) and she almost died in 2019. That ramped up the caregiving stress.

Then she was found to have a large aortic aneurysm at high risk of bursting a few years later. She doesn’t want surgery so of course living with someone who could die at any minute, plus her Alzheimer’s, has been a challenge.

The same year my Mom was ill, I was also violently assaulted by someone who I hired to work in my home. I’ve gone to therapy but still have issues with hiring people again. Which also adds to the caregiving stress since I’m already doing this alone.

I still run my small business, which is just me and a contractor. I have thought about stopping but I think it’s important to have my own thing going on. Plus I don’t want to tank myself financially more than caregiving already has.

My favorite thing to do in the world is run. And the attack made me scared to run outside alone. And I left all my friends when I moved due to being stalked after the assault. So that put me back into the overwhelming caregiving situation totally isolated. Then I became injured and the running wasn’t happening at all.

I also get depressed and gain weight in winter and this area is bad for that.

So yeah it’s been bad. When my Mom went in hospice I thought I would just deal with it all “after”. But then she went off hospice and I realized she could continue to beat the odds for some time and I can’t let all of this permanently disable or even kill me.

Then I got the pulsatile tinnitus and that was where I drew the line and began making changes to get the old me back.

Hopefully it’s not too late.

Iris L.

KHA, you have had quite a lot of challenges. But you have prevailed! Good for you! You won't get your old life back, but you will get a new life. This is because what doesn't kill you, makes you stronger! And you can be stronger after all that you have gone through.

Are you seeking support from the members on the caregiving boards? I believe peer support is imperative. I think you should seek as much online support as you can find. Dementia caregiving is too much for one person. It is vital to keep yourself strong. Don't let dementia take out two people.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/226885#Comment_226885

I haven’t been on the caregiving boards yet. But I’m making a lot of changes. So I’ll go check it out. Things can’t go on as they have been.

My sister and her husband came to visit and I put them to work to help me with projects I’d fallen behind on. They acknowledge finally how overwhelming the situation is but there is still a blindness to the effect it’s had on me.

I’m meeting with a therapist to go over unaddressed issues from the assault, and so on. The therapist showed me what trauma does to the brain, guess what, it shrinks the hippocampus and dulls the prefrontal cortex (what does that sound like) in addition to overstimulating the amygdala.

So a lot of things I’m working on continuing to improve.

Iris L.

LHA, it can be hard to ask for and to accept help. Your therapist can guide you in this area. Other people never comprehend the toll of caregiving unless they have had personal experience. This is what members talk about on the boards. It will help you to read several threads to learn that you are not alone in your situation as the sole caregiver among siblings.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/227358#Comment_227358

Thanks. I’ve already participated in caregiving support groups on other Internet forums as well as in person. It’s not often because I found many of them depressing. The in person support groups didn’t seem to change anything. I’d go home and it would all be the same. I don’t have a lot of time so I decided it was time better spent doing something else - hiking a trail or taking a nap.

I’ve been a caregiver for my Mom for over 12 years, so that’s also not new. I didn’t know it was caregiving back then, I just said I was helping her because she was getting older and not keeping up as well.

it was ramped up in 2019 when she had the encephalitis and again 2 1/2 years ago when they found she had the large high risk aneurysm.

So it’s not been hard to ask for help but it’s been hard to get help. My family didn’t believe me that she was slipping before her serious illness and even still, not before they started visiting and saw it with their own eyes annually about two years ago. At least they help for the week or so they are here. I’ve given up on my brother to be honest. The grandkids are similarly not involved as that’s been a dead end.

I also was assaulted by someone I’d hired to work in my home. I went through therapy for that but that fear still remains. It was more than the assault, I was stalked, felt just as abused by the legal system, and ended up having to relocate and lose my home and friends to ensure my safety.

So I found a therapist to try to get over the fear but it’s not insignificant. I’d thought the stress and health decline started about 2 1/2 years ago when I tried to go all out for my Mom when they said she didn’t have much longer to live. But the therapist suggested it’s gone farther back because I’ve been under incredible stress since I was assaulted and my Mom got sick in 2019.

I started changing things back in December with my health and this is an extension of this. I was putting up with a lot due to my Mom’s high risk terminal condition but it can’t be at the expense of my own health.

Iris L.

You sound like you have a handle on your life now. I hope the members here can be of help to you too.

Iris

keep_hope_alive

its getting there. We can all just do the best we can at any given point!

I’ll check out the caregiving forum but at this point I want to find out as much as I can about what might be going on with me.

keep_hope_alive

https://alzconnected.org/discussion/comment/226746#Comment_226746

Thank you for this. What were the blood tests that you had done?

I'd read that the newest Ptau-217 and beta amyloid ratio blood tests are 90% as accurate as a PET scan and spinal tap. These are the blood tests I had done, so I'm interested to know if you had these tests or something else?

keep_hope_alive

https://alzconnected.org/discussion/comment/227424#Comment_227424

I have asked my neurologist for a referral for a neuropsychiatric assessment. Hope he approves it as I went to an MCI support group and it seems like others had it done and thought it was a good next step.

I’m also following up on a condition I have that in some rare cases, can be caused by a vascular issue that can cause (a reversible) dementia. The first specialist wants to do a diagnostic procedure I'm not fully comfortable with, and said they wouldn’t really be looking for the vascular issue I mentioned, so I'm going to get a second opinion elsewhere.

The sleep study came out normal without sleep apnea or restless legs etc. Though I still have a sleep disorder, likely circadian rhythm, I’ve had this for years and the memory issues just started this year.

Iris L.

KHA, keep following up. The diagnosis of a dementia is made after ruling out other possible causes of memory loss. Those must be checked out first.

Then you must see a decline in cognition over time. This is why you need to be evaluated by a neuropsychologist, because they can evaluate all dimensions of cognition. All of this takes time and effort.

If you have cardiovascular issues, do whatever you can to ameliorate them. You're on the right path.

Iris

keep_hope_alive

https://alzconnected.org/discussion/comment/228669#Comment_228669

Thanks, but I don’t have cardiovascular issues. I have another condition that can have many causes, some of which may be vascular issues in the brain.

Depending on the type, that can result in cognitive decline, even dementia. It’s a rare condition and it sounds like it would be more rare to have a cause like this, so finding information is difficult. But I’m continuing to look!

If my neurologist doesn’t recommend a neuropsychiatric evaluation I’ll likely ask my primary care doctor. I just don’t even know where someone would get this done at.

I've also reached out to my local Alzheimer’s association to see what resources they may be able to provide. They also do cognitive screenings, the MOCA and MMSE. I’m somewhat interested in doing one of these since I did SLUMS.

I’ve made several changes in the past couple of months since that original screening so I don’t know if those changes would have improved anything but wouldn’t hurt to find out. They also said they can give me an idea of what areas I may be struggling in. From the SLUMS screening I just got a score.

Iris L.

Cardiovascular includes vascular.

Iris

keep_hope_alive

Hi Iris,

Yes I know cardiovascular includes vascular. I was clarifying that was not my issue.

A person can have a vascular issue in one part of the body and not another.

I consulted with an interventional neuro radiologist because the vascular issue I referred to, that may be causing my cognitive decline, is in my brain.