What were your first symptoms?

Lauralynn59 · September 2

I am curious what the early symptoms those here experienced? Long-term or short-term memory loss? decrease in ability to focus? Any other mental symptoms? Any physical symptoms? Were the symptoms constant? or episodic/occasional?

I have had episodes of extreme foggy-brainess over the past 5 years along with a loss of (mainly long-term) memories. I have spoken with 2 general doctors, both of whom did fairly extensive bloodwork to find nothing ("your bloodwork looks beautiful"). I did get a referral to a neurologist about 4 yrs ago. We chatted and he said next steps would be an MRI, though he did say it could just be "normal aging" (whatever that meant). The problem is that in between the episodes, I begin to feel more normal and am so relieved that I plow forward in hopes that it won't happen again. During the episodes, I feel very mentally "out of it" but sometimes I think I also feel a level of physical difference - but then I wonder if I'm not just being overly focused on how I feel. For example, I feel like my eyes aren't working well with my brain (if that makes sense) to take in what I'm seeing and I have often felt like there's a little pressure in my head. To top it off, about 9 months ago I developed tinnitus. Visits to a ENT show no obvious cause - I again got the "it could be normal aging".

I am feeling like this more and more, to be honest, and I'm scared. I am functioning okay, and even took a in-office cognitive test at my last physical which I "passed with flying colors". I still work at a job requiring challenging cognitive thinking and am doing fine for now, though my confidence has been rattled. I am mid-60s and need to work until 70 and can't afford my employers loss of confidence in me. I am finding I don't like to socialize as much for the same reason - worried that someone will say "remember when we . . ?" and I will look at them either dumbfounded or try to pretend.

I am in my head constantly debating what is happening to me. The bottomline is that I just don't feel "normal" or at least like I used to. Something has changed in my head. I know the easy answer is getting an MRI, but I'm so afraid to hear the results.

Does any of this sound familiar? I have so many more questions for those here in this forum, but I'll pause for now. Thanks in advance for any thoughts or advice.

marionwilhelm · September 2

I'm sorry that you aren't getting any useful help. So many doctors don't really know how to cope with a dementia-esque diagnosis. It's still a great unknown but there is more & more data as studies are done & diadnoses increase.. I found out I have Mild Cognitive Impairment. I live in a small city of 85,000. We have no neuropsychologist or anyone that specializes in dementia: diagnosis, treatment & help. My PCP is awesome but limited.

About 3 years ago I suddenly could no longer organize myself for meals-recipes or purchasing the ingredients. At the store Id gaze at the raw meat & feel sick. At any rate I immediately got us on a good meal prep service like Blue Apron & that dealt with that. I'm very forgetful & by the end of the day really tired & my forgetfulnes increases along with my frustrations.

I am both short term(mainly) and long term forgetful. If Im really overwhelmed I have trouble getting all my words out.

And of course there is the huge, massive, enormous group of people that tell you that you're fine & its normal aging. I smile & say, “maybe” or “I hope.

Genetic testing might help, A PET Scan is definative I believe, there are few participatory tests that are adjunct, too.

Its the end of the day, Im tired & Im afraid I'm not making sense. 😊

David1946 · September 2

https://alzconnected.org/discussion/70511/what-were-your-first-symptoms

Last fall I went to the Dr and saw the N.P. because I was having hallucinations so she sent me to a neurologist and she gave me a lot of tests. She had me try to draw a clock with the time of 10 minutes to 11 and I could not do it and I could not remember the 5 words that she gave me she told me not to drive. I could be having a conversation with my wife and all of a sudden I could not remember what we were talking about.

Iris L. · September 2

Welcome Laura. Ask your doctor to refer you to a neuropsychologist for extensive neurocognitive testing. My testing lasted six hours, done over three days. This will determine if you do in fact have objective deficits. You may need to look for a major medical center.

An often overlooked condition is sleep apnea. You might ask for an overnight sleep study at a sleep lab to search for sleep apnea. Sleep apnea can cause fogginess.

In the meantime, visit www.askjan.org for work accommodations. Review your latest annual employee review for warnings of poor performance. If you do have written warnings, you have to become more persistent about your evaluation. You may have to take sick leave, pending completion of your testing. After you have all of your results, you will know if you have an early dementia or a dementia mimic, which may be reversible if caught in time.

Please continue posting and keep us updated.

Iris

Bobscape · September 7

https://alzconnected.org/discussion/comment/221596#Comment_221596

You are making perfect sense.

ricardo · September 13

Looking for a chat?

ricardo · September 13

Maybe no ones around

ricardo · September 15

Anyone here???

ricardo · September 15

jackiputnam · September 23

All of what you said rings true. The visual not hooking up with the brain…totally get that. Especially when I’m tired or just woke up. I’m the third generation in my family to have dementia so I was sorely disappointed but not shocked when I started having problems. I made a bizarre mistake driving and that’s what pushed to get on the diagnosis train.

llkahl · October 1

In addition to all the memory issues and lack of motivation and clarity I had depression and suicidal thoughts. Since my family has a history of depression, anxiety and suicidal tendencies, I made sure that my PC and neurologist were on board. They have been working to improve my mental health, and so far so good. The Memantine and Donepezil have made a huge improvement in my overall health and wellbeing. Be honest with yourself, it took me years to finally admit to the depression and mental state. Don’t make the same mistake. It is treatable.

What were your first symptoms?

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