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Joined: 7/24/2022
Posts: 1
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I have been diagnosed with early onset dementia since I was 47 4 years ago. I have just started medication because the medication was making me sick before and I had to stop the medication. So far this medication is working well, and I am not having any more side effects. My doctor said that my diagnosis is “progressive “. Some days are good and some days are not so good. I could never have gotten this far with my health without my husband’s help.
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Joined: 12/15/2011
Posts: 18704
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Welcome petshopboys. Your doctor says your dementia is progressive. What do YOU say? Do you think you are progressing?
Iris
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Joined: 3/11/2021
Posts: 4
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In my mid 40s.
Have been followed by neurology for many years. MRI in 2017 showed mild atrophy for my age. Two follow-up MRIs showed no progression. Recent (year ago) neuropsych testing led to MCI diagnosis.
Just had a volumetric MRI. Left hippocampus shows very low volume for my age. General atrophy also shown. Going to take these results to a neuro who, hopefully, might care.
I think an eventual dementia diagnosis is coming, soon.
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Joined: 12/15/2011
Posts: 18704
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Welcome back, icesheet. Progression is not absolute, you just have to wait and see. You have been under observation for many years, and only now have a dx of MCI? I have been under treatment since 2009, and I am about the same, still with a cognitive impairment not otherwise specified diagnosis. I posted a thread on the Spouse/Partner board entitled "Regarding an MCI diagnosis". You might like to take a look at it.
Iris
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Joined: 3/11/2021
Posts: 4
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Thanks for your response. There was a significant decline about five years ago. Providers were hesitant to give me an actual diagnosis, and to an extent some were dismissive. The first time I was told MCI was about a year and a half ago by neuropsych. Now with the obviously bad MRI result, I think some of the dismissiveness will change.
Meanwhile, my mental state is not good.
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Joined: 12/15/2011
Posts: 18704
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Icesheet, I'm sorry your mental state is not good. Is there anything I can do for you? In 2010 I was told by a geriatrician that I had dementia, and I fell into a deep depression lasting about nine months. I came out of my depression after much communication with the members here and after coming to a few decisions. I believe it is very important to develop a philosophy about this illness. I hope you will soon find solace.
Iris
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Joined: 12/15/2011
Posts: 18704
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Icesheet, it is important not to be too dependent upon imaging studies, because they may not correlate with your actual functioning. Consider the nun study, some with dementia had normal brains on autopsy, and some with no dementia had pathological changes consistent with dementia. What does this mean? I means that the current science is not 100% predictive of dementia. Imaging studies and other tests are used to confirm clinical findings, what is actually happening with the patient.
It seems that you had a significant decline five years ago. Sudden cliff-like declines are symbolic of vascular pathology. Ask your neurologist about this. If you have a cardiovascular disease history, such as high blood pressure, pay close attention to treatment modalities. This includes medications, nutrition, exercise and stress relief.
My BP was 160/100 when I first saw my neurologist, yesterday it was 124/76!
Iris
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Joined: 9/5/2022
Posts: 69
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Hi pet shop boys 22!
Welcome!
Thanks for sharing story!
It’s good your husband support you.
I was 47 when my family and I noticed changes in me.
I was diagnosed with early onset dementia at 49 and I swill be 53 next year.
I’m having memory loss and mental decline.
I’m being to have medical and mental problems.
I hope you have a good night
Take care xxx
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