Diagnosed with EOD a year ago at 55 years old

Forrestfaun

Hi. Last year I was diagnosed with EOD a day after my 55th birthday. Then after a lumbar puncture, PET scan and MRI the neurologist said she was doubting her original diagnosis. So then I spent about 5 hours doing neuropsych testing and even though it showed I had all the symptoms of LBD, the psychologist said that my cognitive decline was likely due to mental illness. I do have a history of PTSD, ADHD, Autism (Aspergers) and depression since childhood, but have not had any incident with any of these disorders for over 30 years. I have been on anti depressants most my life. Anyhow, I have read two sides to mental illness in reference to EOD - long term mental illness can lead to EOD or it can simply exhibit the same symptoms as EOD.

My neurologist is very young. She graduated and started with WashU the year I was diagnosed. I respect that she's qualified to make a diagnosis, but I feel like she's changing her opinion without genuine experience - just book knowledge. Both of my parents had Dementia - my dad died of LBD, my mum died of Alzheimers and so did both of her parents. My dad's parents: one had dementia and one had Parkinson's. So it's pretty common in my family.

My regular doctor and therapist (specialist in dementia patients, not for other mental issues) have both told me that with my symptoms, I could have dementia that just doesn't show up on the physical tests or perhaps only shows up in an autopsy. But in the meantime, I'm worried because if it's something that could be treated a bit, like Alzheimer's, I'm missing out on that treatment and losing who I am while WashU dismisses my concerns.

Does anyone know how to find a second opinion? I imagine, and perhaps I'm wrong, that if I asked for a second opinion at WashU, they would just defer to their team mate that I'm already seeing, so I would probably have to go to another medical establishment I guess?

Thanks for any and all advice. Hope you're all doing as well as you can.

keep_hope_alive

I’d go to a different location altogether. I had a screening show mci (also based on my own observation of what was happening) that after extensive testing and a neuropsychological exam turned out to be mental health as well as lifestyle (sleep issues and high stress).

After making several changes, over time, I have improved. My Mom had Alzheimer’s and so did my grandmother on my father’s side. I’m considering that I dodged a flying bullet by catching things early. I don’t think it’s a free pass because if the lifestyle changes are not maintained I believe that could still be my endpoint. Maybe it could anyway but “not today”…

Iris L.

Symptoms of depression can indeed mimic dementia. If this is the case, aggressive treatment of depression is indicated. Perhaps different classes of antidepressant medications must be tried for a minimum of six weeks, to allow for medications to reach therapeutic blood levels. Psychotherapy (talk therapy) can help.

Dementia is progressive, so after 6-12 months there should be a decline in testing. Usually depression is not progressive.

Nowadays there are biomarkers in blood and PET testing that can point more conclusively towards a dementia diagnosis. I agree, visiting a different location may be needed.

Please continue to update on your experiences.

Iris

Forrestfaun

https://alzconnected.org/discussion/comment/244420#Comment_244420

Thank you. I have had treatment for depression all my life, though the depression has never been extreme enough to lead to anything other than medication and an occasional therapist visit. Now I'm seeing a therapist who specializes with dementia patients and he has seen a decline, neurologically - he told my husband - in the last 6 months. I think that's why I'm more concerned because I haven't noticed the difference, but evidently my husband and kids have. My therapist also speaks, with my permission, to my husband and we had a couples meeting with him a few days ago to go over the issue with the original diagnosis. That's when he told me that he was noticing a "progressive decline" with my dementia.

Along with that, he discussed with me that even if I'd had mental illness all my life, so much that it did indeed affect me deeply, it can cause actual dementia and they should consider that if that's what they are using as their diagnosis. I think what concerns me, my husband and my therapist the most about this neurological team I've been going to, is that they have never offered treatment or advice for treatment or anything; even suggestions for depression…any mental illness or anything for the dementia that did show up in the neuro testing (she did say I had memory, word and spatial issues to a moderate level of concern). Nothing. It's hard to believe they have any real care for any treatment for me if they can't at least do more than label me and remain silent.

Worse still, I discovered yesterday that on my medical notes, the neuropsychologist had labeled me as having HIV. Perhaps because I'm gay? Whatever her reasoning, when I emailed her to have it removed (it had been on my record for at least a week without me knowing until yesterday) she did remove it but did not apologize or acknowledge my concern. It's really hard for me to not feel that if she was making that serious of a mistake, it would be hard for me to find any of her findings credible from lack of education on her part or simple bias.

I don't know. I have to chuckle…I used to volunteer in a psychiatric hospital as a hospice worker and from my experience, if I had the mental illness she claims I do, I would have reacted a bit differently than just asking her (kindly, though I did admit my shock and say, "geez.") to remove the harmful information. Oh well. I guess I'll just have to wait another 6 or 12 months to see where I am at that point. I just need to find a different neurologist with a different hospital/medical establishment. That's the difficult part in the area I live in.

Forrestfaun

https://alzconnected.org/discussion/comment/244411#Comment_244411

Thank you for your response. I'm very happy to hear you're responding to treatment; sleep and stress are truly crippling. It's wonderful to find that changing our lifestyle can make a huge difference for our brains.

Iris L.

It is sad to note that the diagnosis of the dementias continues to be so erratic and not straight-forward. It is hard to make necessary plans without knowing what one is actually dealing with. Keep in mind that the dementias are progressive and eventually terminal, whereas usually, the various brain injuries from different causes are not progressive and not terminal. Also keep in mind that the rate of progression with any dementia is individualized and might be last or slow, lasting up to twenty years.

Iris