Blood test results - concerned
Phospho-Tau(217), P plau217, P
0.313 pg/mL
High
REFERENCE VALUE
Negative: ≤ 0.185 pg/mL
Intermediate: 0.186-0.324 pg/mL
Positive: ≥ 0.325 pg/mL
Comments
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I'm sorry you've not heard back from your NP. I know how frustrating that can be. Personally I can't help you with what those values mean, its out of my wheelhouse. Try to not be over focused on the numbers and give the office another call.
Let us know what you find out.
eagle
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thank you eagle. I heard this afternoon after calling the patient advocate the day before. I have an appointment tomorrow morning to discuss results
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Very good. After your appointment, and if you feel like it, do share how your appointment went.
eagle
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received the news that I have high markers for Alzheimer’s and they ordered an MRI and neuropsychiatric test.
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How are you feeling about all of that? Besides overwhelmed? Whatever you are feeling, its normal. We all react differently. I know when we sat the neurologist the first time with my DH and he pretty much told us, without telling us, he also said - give me a year. i need a year to do testing, let you adjust to this news & accept it as best you can and together we'll make your plans. It did take a year to get a "formal" diagnosis, but we all knew. So these things all take time.
I would encourage you to have someone take you to the neuropsych exam. Not because its difficult, but because you'll just be tired afterwards. I don't know if your driving, but someone to drive you home would be excellent. Its just a safety factor.
We're here to help you.
eagle
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thank you for checking in on me. I’m ok so far I just want all the information so I know exactly what I’m up against. Some answers like exactly when will the decline take place etc is really something that can’t be answered. I’m worried about my husband and family members and how it will affect them. I will definitely take your advice and have my husband take me to the neuropsych exam. I’m grateful for this forum it’s been very helpful so far. My siblings and I are doing the Walk to End Alzheimer’s on October 18th in honor of our Dad who just passed in May. We will be walking for me too now
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You also need to get a PET scan of your brain. Best of luck.
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thanks for responding. The NP I’ve been working with has been a nightmare. Extremely incompetent. (Long story). I’m in the process of changing neurologist but the new office can’t get me in until March 10th. I did indeed finally have the MRI done and you are absolutely correct that a PET scan should have been ordered instead. So just this week the NP finally put in the order and the first appointment I could get is February 3rd. Beyond frustrated at this point but I’m doing everything I can do. I’ve spoken with professionals at the Alz hotline and they have been wonderful. I’ve also talked to the nurse with the new neurologist and she’s been a big help too unfortunately it takes time to get an appointment everywhere. So Feb 3rd I have PET scan, March 10 I see new neurologist and April 13th I have neuro psych testing. I will be reporting the current NP to the medical board as soon as I have the PET scan. I’m afraid to do it before that. My primary is also filing a grievance. It’s been a series of mistakes by the current neurology office. Thanks again for your input it’s much appreciated
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I would also ask your neurologist about Lumipulse, blood test to detect Alzheimer’s 95% accurate….. more than pet scan.
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Oh I had no knowledge of this blood test. Thank you so very much for this information
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I requested the Lumipulse blood test and the NP responded
It is the same thing as the P217 test which you already had done.
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Ask if you can be put on a list for cancellations for an earlier appointment and check to see if there are other imaging facilities that can get you in faster for the PET scan. Our neurologist called us as soon as the scan results were in to discuss the results.
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I can completely relate. I am retired Family Physician who was diagnosed about 6 months ago with early onset Alzheimer's at the age of 59. It took about 12 months from the time I stopped seeing patient's and went out on disability until I had a final diagnosis. The story is long but suffice it to say, insurance company denials of tests, long waits for imaging and consults etc. After 6 months initially of having tests scheduled and denied by insurance I was required to get a spinal tap because my insurance would not authorize the amyloid blood test or PET scan. The spinal tap came back non diagnostic and to make a long story short after continued denials of tests needed to finally make the diagnosis I was able to get a consult through a colleague with the director of the Alzheimer's unit at the University of Pennsylvania. After a 2 hour visit with his department and him I walked out with the diagnosis. Then it took another 6 months to get treatment started because of our local insurance. I ultimately needed to get Lequembi through the VA. This won't necessarily make you feel better about your current process but I share so you know you are not alone. Many of us have had multiple hurdles getting a diagnosis and treatment. You have come to a great place to get information and support. I will say, despite the diagnosis I was relieved to have an answer and to start fighting it. I have embraced it and started sharing my journey. I have started a YouTube Channel with a podcast called Friends with Medical Benefits. My friend and I are sharing our Journey together. He has been diagnosed twice with colon cancer and I have Alzheimer's. I hope you find another easier to manage answer but if not, stay here and share and learn like we all are trying to do.
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I am so lucky as far as insurance goes so I can only imagine your experience and frustration. I believe we are alike in the fact that we just want to be able to deal with whatever it is. I’m a person of action and I fully admit patience is not my strongest attribute. Thank you so much for your words I truly find comfort in the wisdom and compassion I find here.
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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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