I’m 45 and something is very wrong
I’m 45 F, normal, educated, married, mother of two teens and one adult. I don’t drink or do drugs (I used to drink but I stopped in 2020 because my liver enzymes were high - they quickly went back to normal when I stopped - I’m not an alcoholic it was super easy to stop). I’m a normal boring suburban stay at home mom with no mental health issues or weird history.
I have seen a neurologist several times and my pcp is really really concerned. But I feel like I’m getting no where and I’m hoping to find guidance from those who have navigated similar situations with their loved ones.
It started with short term memory deficits I blew off as perimenopause. It dramatically worsened over the course of a year and one evening after asking my husband the same question 3 times in 20 minutes he told me to talk to my doctor. I’d also been forgetting words and losing what I was talking about mid sentence and or spacing out mid sentence. And having trouble regaining my thoughts.
When I saw my pcp and gave him examples of the severity he told me he it was far beyond perimenopause and long Covid (which he initially considered). He referred me to a neurologist. That was about a year and a half ago. In the time it took me to get into the neuro things worsened. I started having extreme executive functioning issue. I already have adhd and have taken vyvanse for decades and had been “better” on the vyvanse. But now despite the vyvanse my executive function has gone from bad to disabling. It started with bent unable to cook a meal. I had to FaceTime my friend and she tells me what to do. I can’t hold information while considering other information. Also in that time I started having what I discovered later was visual hallucinations. I think I see animals and children all of the time. But like then they aren’t there and I can recognize that it wasn’t real. I also started getting lost while driving evn when going places I go several times a week for years, even when using maps app navigation. I forget to listen to the instructions.
With those symptoms I saw neuro. Normal eeg, normal mri, a neuro tacks cognitive screening in which I scored exceptionally low in executive function, short term memory and one other area I can’t remember and then normal in the other categories. He also did a ton of blood work to rule out things like vitamin deficiencies and stuff like that all normal. He checked ptau which was 17 and I did not have the early onset Alzheimer’s gene. He wanted me to do a pet scan and a full neuropsych eval but my insurance at the time was terrible and it would be thousands and thousands which I didn’t have. So he wanted me to go to an Alzheimer’s clinic to be evaluated but they wouldn’t take me because I’m young and don’t have the gene and stuff.
So I ignored this for several months maybe a year.
Everything is worse but doesn’t seem too bad at times because my family has adapted and I’ve come up with strategies. Like using alarms (which isn’t fool proof because I would set an alarm called “turn off water” but then when it went off and couldn’t remember what water I meant to turn off so I flooded my backyard because when I couldn’t find running water I figure I must have set that alarm on accident), my husband does all the shopping and cooking, my kids are teens and can take care of themselves and remember their own shit. But everything is worse. Most days I don’t know what I did. I buy things and they come and I don’t remember ordering them. I get bad anxiety in stores because I get scared I’ll get lost or lose track of time. I don’t work. I have no responsibilities other than driving my kids places and I pay a few of the bills but recently I’m really struggling with that.
Recently I had a follow up with my pcp and told him my more recent “new” symptom which is that I’ll be driving and suddenly have no idea what road I’m on and what direction I’m going I still know how to drive and who I am and where I’m supposed to be going but I don’t recognize anything around me and I don’t know what direction I’m driving. It’s happened three times and two of the times I had to pull over and figure it out on maps. All three times I was within 3 miles of my house on a road I know well. One time I was just a few blocks away from home.
My PCP low key freaked out and said I need to go back to the neurologist and pay whatever I need to to do whatever tests he wants to do. He says it’s serious. He says I’m saying stuff that he hears he’s 80 year old patients say. Oh also I forgot to mention most my symptoms are better and worse some days with no apparent reason why. Also a couple years ago I started having weird movements with my hands and feet it’s not tremors, I CAN stop it if I concentrate. But when I’m relaxed I frequently squeeze my toes tight to each other or press my feet into each other and my fingers do similar stuff. It’s getting worse recently, my kids started noticing it and mentioned it. I’ve noticed it for a couple years but blew it off as nothing since I CAN make it stop if I focus on it. I can be still if I try hard.
So I’m supposed to go back to neuro now. I’m scared. I’m scared it’s Alzheimers or Lewy body or some other dementia. I think that’s why my pcp got so serious. And im just scared. I’m only 45. And I live in a town with no family and few friends. I also keep forgetting to call the neurologist to make the appt so that’s great.
I guess I’m looking for encouragement or advice maybe there’s something that it could be that my neurologist hasn’t thought about, maybe someone went through something similar and is ok. 😞
ETA I forgot to mention apathy. That’s a huge symptom that started about 6-12 months ago. I don’t really actually care about anything with the exception of a few random freak outs that didn’t make sense. I just care like 80% less than I used to. Which isn’t terrible tbh. My husband says I don’t have any personality changes he’s noticed.