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

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.