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Anyone experiencing body pains

Tmoreno
Tmoreno Member Posts: 1 Member
edited October 2025 in I Am Living With Younger Onset Alzheimer's

hi am am newly diagnosed early onset dementia,

My doctor is still finding out what kind dementia I have

My understanding is I have Alzheimer’s in my blood but not reached my brain yet ,

what the heck does that mean ?

I am having a Pet scan next ,

I kind feel like my doc just dumped me or put me on hold ,

I don’t know if it’s cause he’s waiting on PET scan , I don’t know what to expect . This is why I joined this group

I have lots of questions now like these headaches that I have now . I have never had issues with headaches and feeling so tired and body aches I have now . Is this all in my head

Appreciate any feedback back

Comments

  • IngridS
    IngridS Member Posts: 13
    10 Comments 5 Care Reactions
    Member

    I just joined this group and got my diagnosis this fall, after 3.5 years of testing, multiple doctors, multiple imaging of mostly my head, but also of the front of my neck, the back of my neck, and my mid/upper back. As for your question, “how can it be in my blood and not my brain”I think that means they can find traces of the proteins associated with specific types of dementia that first show up in your cerebral spinal fluid; later on those traces build up in your brain.

  • Leonard Shelby
    Leonard Shelby Member Posts: 9
    First Comment
    Member

    The PET scan will let them see if there are any amyloid plaques in your brain. Those are the things that cause Alzheimers. Doc is probably just waiting on those results. Sorry they left you out on a limb there. Hang in there. You will know more soon.

  • Roxygirl
    Roxygirl Member Posts: 14
    10 Comments
    Member

    There is also a new blood test, Lumipulse which can detect Alzheimer’s. Alot easier than Pet Scans or Spinal Taps!

    My neurologist recommended this and just received my diagnosis this week.

    Needless to say I am sad, scared, angry etc.

    Sending prayers and hope to all

  • Michele P
    Michele P Member Posts: 292
    100 Insightfuls Reactions 100 Likes 100 Comments 25 Care Reactions
    Member
    https://alzconnected.org/discussion/74404/anyone-experiencing-body-pains

    The blood test can show the plaque, but that doesn’t necessarily indicate that you have Alzheimer’s. A PET scan of your brain will give you a diagnosis if it is Alzheimer’s or a type of dementia.

  • Janeybird1
    Janeybird1 Member Posts: 1
    First Comment
    Member
    I am newly diagnosed w/ Alzheimers. I have a history of autoimmune disorders, some of which cause body aches and pains (Addison's Disease, Polymyalgia Rheumatica, Hashimoto's hypothyroidism). Of course the dementia is the biggest issue, but keep bringing up your pain if none of you care team acknowledges it. I wonder if your GP, a gerontologist, or a phyical medicine doctor would be a good to see?

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
Read more

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