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Anyone experiencing body pains

Tmoreno
Tmoreno Member Posts: 1 Member

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: 12
    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: 6
    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: 2
    First Comment
    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

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