Blood test results - concerned

lindajny · September 23

Received my blood test results last week and they seem concerning to myself and my husband. Haven’t heard from the NP to discuss the results. I called and left a message - feeling frustrated

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

eaglemom · September 24

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

lindajny · September 25

thank you eagle. I heard this afternoon after calling the patient advocate the day before. I have an appointment tomorrow morning to discuss results

eaglemom · September 25

Very good. After your appointment, and if you feel like it, do share how your appointment went.

eagle

lindajny · September 26

received the news that I have high markers for Alzheimer’s and they ordered an MRI and neuropsychiatric test.

eaglemom · September 27

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

lindajny · September 28

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

Michele P · 7:13AM

https://alzconnected.org/discussion/comment/254544#Comment_254544

You also need to get a PET scan of your brain. Best of luck.

lindajny · 9:01AM

https://alzconnected.org/discussion/comment/259846#Comment_259846

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

lindajny · 9:02AM

Blood test results - concerned

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