Newbie here trying to navigate this

hannahbanana14

Hello, Not formally diagnosed yet, but my pTau-217 LabCorp test showed a .37 result. I was already diagnosed with MCI last March. My pTau test last year resulted in a .18 which is right at the cutoff, thus the retest. So somehow my levels doubled in a year. This shocked my doctor who seemed to poo poo my concerns up until this point. My mom has AD and all my brothers and sisters and I all have been struggling with memory problems since we hit 50 years old. I am 63. My doctor ordered an MRI which yesterday I got word that my insurance company is denying paying. I called the doctor and left a message yesterday and she never got back to me yet so I guess her office is closed on Friday. MRI is scheduled for the 27th but now I don’t know what’s gonna happen. My doctor said insurance company will deny PET scan if she doesn’t order an MRI first. After reading several posts on this forum, I see a number of us have had to deal with insurance denying testing for this.

At my Dr appointment last week, my doctor told me to go ahead and start the disability process now. she started me on Aricept which after two days I was so sick in the stomach and ran a low-grade fever that I had to get off of it so that I could work. I thought about restarting it but cutting the pill into quarters and gradually introducing it to my body and increasing the dosage til I get up to one pill. I also read that the patches don’t give people the G.I. symptoms. My doctor told me after the MRI that she would write up an order for the PET scan and then send me to neurologist to start infusions. I ASKED HER IF THIS MEANT I HAD EARLY ALZHEIMER’S AND SHE SAID SHE COULDN’T DIAGNOSE ME YET UNTIL I GET THE PET SCAN, BUT THAT ITS VERY, VERY, VERY LIKELY THAT I HAVE IT. Sorry for the all caps. that was a mistake.

Anyway, my head has been spinning since that appointment. I texted all my siblings in a group chat and I got a thumbs up from one brother, too bad from another brother, and a decent reply from one of my sisters. There are seven of us kids. And no one asked me about my follow up appointment at the doctors last week. Needless to say, I do not feel supported at all from my family. That in and of itself was almost worse than a possible AD dx. I have three kids, and the oldest I thought would be the one that would be concerned and help me and she did act that way in her texts. We scheduled a phone call and she never asked me about how I was, just commented on my will and how she didn’t think it was fair because I’m leaving some things to my youngest daughter who lives with me who is special needs and I want to make sure she has a roof over her since she can’t afford rent or a home and may never be able to. I am divorced too. So right now my biggest fear is who is gonna take care of me and where am I going to get the money from? Yesterday I was sooooo incredibly depressed with it all. I’m thinking I might have to go the die with dignity route with refusing food and drink. I’ve only told my closest friends and don’t want to tell anyone else because then any time I forget something, they will be thinking that’s my Alzheimer’s and I don’t want pity. Anyway, I’m feeling alone in this but better since finding this site.

LBC83

Welcome to the club that nobody every wanted to join :(

I was diagnosed with AD in April 2024, after scoring low on the Montreal Cognitive Assessment (MoCA), which was followed up by detailed neuropsychological tests and a lumbar puncture to confirm the presence of amyloid plaque in my brain. I also had a clearance MRI to show no existing brain swelling / bleeding. I started on Leqembi in June 2024, recently completing the 18 month initial bi-weekly dosing and then switching to infusions every four weeks for maintenance dosing. I had anohter MoCA in April 2025 (after about a year on Leqembi) and I scored the same, I take that as a success.

Like you, I've found that many folks don't know how to respond when they find out I've been diagnosed with AD. Some talk about planning ahead (i.e. "getting your affairs in order"), others want to change the subject.

I've learned to tune much of that out and just proceed with my life. I'm taking a class at our local college (free to Seniors), yesterday I ran in a 5K race in my community (my time was about 28 minutes), I'm active in my church, I balance my checkbook, I filed my taxes ontime (and hopefully correctly), I'm planning a vacation to Europe this summer.

Lifes can go on after an AD diagnosis. Keep your spirits up!

jaycey

As the previous person said, welcome to the club that nobody wants to belong to. I'm so sorry about the diagnosis, and I feel for you, as it sounds as if your family is complicated, however I'm so glad you found this group quickly.

It took me almost 4 years to get a diagnosis (and in the meantime they had done unnecessary cataract surgery, because they said it must be that!) despite the fact that when the diagnosis finally came, and the neurologist looked at the earlier MRIs, he could actually see (and showed me) the neurons shriveled up in a corner of the brain! When your current doctor says s/he can't know yet if it's Alzheimer's s/he might mean that it's not yet clear know what kind of dementia it is - fronto-temporal, posterieur cortical atrophy (that's what I have) or some other version.

Some next steps:
- find a good neurologist. Have that person argue for the MRI and the PET. Have the neurologist order an APOE 4 genetic workup. That's what will give the green light (or not) for Kisunla or Iqembi.
- If you're having trouble with the oral, then get the patches (I use those, as well as getting Kisunla once per month). Don't get the generic patches because they irritate your skin.
- start setting up the things that will help your brain stay well: cardio exercise (to circulate blood through the brain), intellectual challenges (puzzles or whatever), regular social contact (this is the hardest when you're scared of being seen as handicapped but it's also the single factor that most predicts well-being and longevity for us.
- Find people you can talk to.

You can have a long(ish) and healthy life with this. It's not the end, although I know it often feels like that.
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hannahbanana14

https://alzconnected.org/discussion/comment/268539#Comment_268539

Thank you for your reply and sharing your story. It really helps to "meet" other people in our same shoes. That's great you are still active and doing things.

hannahbanana14

Thank you for your response. What a 4-year journey you have had to get a proper diagnosis. So sorry you went through that. Thank you for the practical next steps. I'll definitively check out the APOE 4 genetic test. It's good to hear you do well on the patches and not to get the generic kind. I'll make sure to set up the things for a healthy brain. I already do them but I work from home so don't get the social interaction as often as maybe others. But, my youngest daughter does live with me. I walk 5 miles a day too. Thanks, again!