Medicaid Enrolled Neurologist in NY Who Is Willing To Order Beta Amyloid & Phosphorylated Tau Tests?

#1

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Hello, all -

I am reaching out to ask if anyone has any recommendation of

a Neurologist in New York,

…who accepts Medicaid,

…and is willing to order the Beta Amyloid 42/40 Ratio, and Phosphorylated Tau (I think it’s 181 and 217) tests -

I have a Neurologist, and she is unwilling to order the tests for me -

I DO have memory issues, and am worried,

and I can’t afford to order them through a website, and if a Dr. would order for me, my insurance will cover ;

…I think these tests should be commonplace for every patient -

people need to know what they are up against :frowning:

Thanks for any resources anyone can share!

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#2

I hope you find what you are looking for. I am very curious, if you tested positive, what would you do differently? How would this impact your care, life, etc? I would love to understand more about this.

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#3

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hi there @Nlo

…i was reading somewhere - but, typically, i can’t remember where! …sigh. -

that with some new drugs being tested,

at the very earliest stages of the disease, they may be able to actually pull (amyloid, or, i think it was, tau) out of the brain -

so if i -

and others, if only this testing could be made affordable and widely available -

could catch the disease at its very earliest stage,

…i feel there might be some hope for us ;

…also, the article did say, that the drug(s) MIGHT be able to remove the tau, even in more advanced stages of the disease …just with more side effects…

…

…and if it would be beyond help :frowning: i at least hope i could have time to get my affairs in order :frowning: - my life, currently, is kind of out of control …sigh.

…

…just asked another neurologist, and she, too, was unwilling to order the test(s) -

which i find to be so “difficult” of her -

…as though it would cost Her money personally, or as though she is incurring Completely unnecessary costs to my insurance -

in my case, I argue that it’s QUITE necessary, because, for example,

i cannot remember how to get ANYWHERE - no matter how many times i’ve been somewhere, i can’t remember how to get there,

Nor, how to find my way back, when i’ve gone somewhere :frowning:

…i guess i am going to have to pay - which, it’s NOT that i have any sense of entitlement(!), i just can’t afford :frowning:

…but i think the tests (Beta Amyloid 42/40 Ratio, and Phosphorylated Tau [i think, 181 and 217]], are like $1500 EACH

(also, there is “Neurofilament Light Chains,” which at least my Endocrinologist will let me get -

and note to everyone: …This value Does seem to go up over time, “as a normal part of aging,” they are trying to sell us on,

but i’m not buying it - because, with age, the risk of Alzheimer’s also increases EXPONENTIALLY, especially for those lucky enough to make it into their 90’s!

…so, yeah, i’m gonna test …and Try to fight, with whatever drugs …and interventions that folks like us here on this board, feel might be on to something!

…and i will SHARE any developments i think might help :))

…wishing SAFETY and GOOD HEALTH to all,

GOD BLESS :slight_smile:

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#4

Thanks for sharing your story. Here are a few thoughts that came up for me that may have some relevance to you. Not medical advice, but just thinking out loud.

  1. You may be able to request a professional medical advocate to accompany you to your doctor’s appointment, and it may be covered by your insurance. This may or may not result in any changes, but it may induce your doctor to ensure that they are considering all of the options available to you (like the tests you want) and also ensuring that they explain their reasoning as to why or why not in an accessible manner.

  2. I recall that suvorexant sleep aid taken for at least two nights resulted in lower levels of amyloid in brain. From what I recall, it may have bounced back after stopping. However, it was an interesting finding. AI query: decresed amyloid after suvorexant for more details or

  1. There was some thinking that nattokinase and serrapeptase taken at night could reduce amyloid or amyloid effects in brain,too.

In any case, I wish you all the best on your health journey. We are all on this journey together, and I thank you for the blessings over us all!

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#5

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Very much appreciate the tips, @Nlo ! -

and I would love to be able to get Suvorexant!,

As well as, there is an Anti-Seizure medication called Sulthiame/Ospolot,

that has been approved to treat Sleep Apnea …from which I also suffer, AND “can’t be good for the brain” …and the Dr.'s won’t let me have these either! -

Gee whiz, I can’t wait for the day when I’m Independently Wealthy and can afford all this stuff without Insurance… (Not likely, I know!)

Thank you again so much! :slight_smile:

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