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New to Group 😊

GEH
GEH Member Posts: 5
5 Care Reactions First Comment
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in I Am Living With Alzheimer's or Other Dementia

Hi All,

Just finally received the news that I definitively have of Early Onset Alzheimer's about two weeks ago. After almost two years of a bunch of symptoms that were diagnosed one week and then told never mind it's not that, the next. I was starting to think I was a hypochondriac. 😆 Part of me is soooo happy to finally have a definitive diagnosis. Part of me is soooo sad that I finally have a definitive diagnosis. I have told a few close close friends. (I have no family members to tell) I think I still might be a little numb from the news... and trying to wrap my head around everything that means to the rest of my life.... GE - clear

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  • Iris L.
    Iris L. Member Posts: 4,478
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    Welcome to our online support group, GEH. I'm sorry you have been given this presumptive diagnosis. The only way to be absolutely sure is with a brain biopsy. It is not uncommon for the diagnosis to change as the signs and symptoms progress.

    How are you managing? Have you stopped working? Are you on memory medications? Do you have questions? The members of this message board and your local chapter can help you plan for your future. Please post back and keep us updated.

    Iris

  • GEH
    GEH Member Posts: 5
    5 Care Reactions First Comment
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    Hi Iris thanks for the warm welcome.

    It has been a journey to get here. It is kinda a long story. I will try to keep it as short as possible.

    I started having issues with my work in early 2017. I was a senior accountant for a international corp. There was something off .... I had just spent 6 months in hospital fighting necrotizing fasciitis and I just wasn't myself. So the journey began. Fast forward a few years past many many erroneous diagnosis (which included a referral to see a shrink because it was all in my head 😂😂😂. "They" knew I had something going on but could not identify. My most recent MRI, from like late July this year showed significant brain shrinkage and other stuff. I don't remember all the details. So the next was LP that I don't know to say it the right way but paus and taus and plaques and other stuff. Yes I had to stopped working about 1.5 years ago. Thank goodness for disability insurance. So here I am. My neurologist also has a company that runs drug trials. Unfortunately, the MRI showed micro bleeds so the three drugs that are in the pipeline or recently approved side effects can be brain bleeds so Doc says cannot take them. I am currently on Memantine. Does not halt or slow process but helps with the brain fog stuff they say. Which it does seem to help me with not feel so scatter brained.

    Wow... I chatted on and on. Do I have questions? About a million of them. Enough for now. GE 😊

  • Iris L.
    Iris L. Member Posts: 4,478
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    GE, all of us have long stories, so don't feel odd. My own memory loss story began in 1987. Some of us have found that using the memory meds (Aricept or Exelon patch) along with the lifestyle habits we call Best Practices have enabled us to prolong the early stages. This is not a cure but a help. Do whatever you can to help yourself!

    Iris

  • GEH
    GEH Member Posts: 5
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    Member

    Thanks Iris ☺️

  • Awto123
    Awto123 Member Posts: 5
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    https://alzconnected.org/discussion/67046/new-to-group

    Hi

    are you aware of any new trials that might be if you

  • Awto123
    Awto123 Member Posts: 5
    First Comment
    Member

    There are many trials and significant

    Breakthrough drugs !

    if you want to talk let me know

    all the best

  • Awto123
    Awto123 Member Posts: 5
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    https://alzconnected.org/discussion/comment/188321#Comment_188321

    I got a pet mri and some cognitive testing and have be diagnosed with Alz early stage

    I have not been told that a biopsy is the only definitive measure for a prognosis

  • Iris L.
    Iris L. Member Posts: 4,478
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    Welcome to our online support group Awto. It's true, only a brain biopsy while alive or a biopsy after death can show the plaques and tangles of Alzheimer's Disease. Nevertheless, doctors have a multitude of diagnostic procedures that can indicate the high probability that a person may have Alzheimer's Disease. What does this mean? For me it means, be observant of changes over time. The diagnosis may be confirmed by the progression of signs, or a new diagnosis may appear.


    Are you getting any treatment, Awto?

    Iris

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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