Early Onset Alzheimer’s Neurologist in NYC

dasherbln

Hi everybody: Been getting really frustrated since my MCI diagnosis that even in Manhattan I’m having a tough time finding a neurologist who specializes in Alzheimer’s, is willing to order PET scans, CSF and genetic tests and doesn’t turn away patients below 55. I’m 48 and am having a tough time dealing with the “we can’t think what it could be other than Alzheimer’s but come back in 18 months” approach. I understand that PET scans etc may not be the be all and end all and wont help me recover my memory loss but when I score in the 1 percentile for delayed recall and flunk two other neuropsychological tests you would think I wouldn’t be treated like I was being over-anxious.  Most recent experience this afternoon was being turned away from NYU Langone’s Barlow Center for Memory Evaluation and Treatment just because I am under 55. I know there are many great doctors in NYC in this field with a good empathetic attitude but need a little help finding one. So, please could you recommend any Alzheimer’s specialist in NYC who deals with early onset and otherwise fits the bill from your personal experience.

Best wishes all,

D

dayn2nite2

You can have any test in the world if you're willing to pay out of pocket for it.  If you are looking for your health insurance to pay, a physician would need a medical reason to order these tests and sorry to say, a 48-year-old with Alzheimer's would be exceedingly rare.

Have you had a MRI and cardiovascular studies to rule out tumor or small vessel changes that can mimic dementia?  Basic blood testing to rule out physical causes of memory loss?  Do you have a history of traumatic brain injury?  There are lots of other reasons you could be having memory loss, how did you become convinced this is Alzheimer's?

Iris L.

Hello again dasher.  I wrote a long response and lost it.  Basically, an Alzheimer's Disease diagnosis is a rule-out diagnosis, after medical, psychiatric and traumatic diseases and conditions have been searched for and ruled out.  There are many dementia mimics, as dayn2nite2 mentioned.

The doctor who ordered your neuropsychological testing should be the one who is doing most of the workup.  If your medical reports are normal or unremarkable, you can be referred to a neurologist.  Don't overlook testing for sleep apnea and check all drugs for cognitive side effects.

Call the Helpline (800-272-3900) and ask to speak with a Care Consultant for further explanation and further help.  

Iris

BadMoonRising

Dasher,

Some of us have participated in studies that required undergoing am MRI and/or Pet Scan, blood work, etc. If you cannot get your physician to refer you to a neurologist who specializes in dementia/Alzheimer's, try enrolling in one of the Alzheimer's studies.  Here's a link to help you get started.

https://www.alzheimers.gov/taking-action/national-research-centers

dasherbln

Yes, over the last two years that I have been seeing a neurologist for the memory problems I have experienced for numerous years at work and in my personal life I have had a full battery of tests, including MRIs, bloods, sleep study, full 4 hours of neuropsychological tests, referrals to psychiatrist, endocrinologist, immunologist (I’m probably forgetting a few lol) and, largely due to the fact that every test was just about perfect apart from abysmal age weighted neuropsychological HVLT-R test results in immediate and delayed recall and in Wisconsin card sorting (even for somebody of not my high education), my current neurologist has ruled out every cause except Alzheimer’s but he is not an Alzheimer’s expert, and I am prepared to pay out of pocket for the PET scans, genetic tests and CSF tests which he says he can’t order at his place. He is just of no more help at this stage. I have good practical reasons for wanting those tests (I anticipate a fight with disability insurance providers when I came no longer work because that is what they do so every bit of back-up could be helpful) and, perhaps because I’m still in some denial, I’m holding out hope its all just something else that hasn’t been explained and I’ll show clear scans.  I’m all too well informed for several years now about this disease which has taken and is currently taking multiple other members of my family to LOAD (but data shows that 89% of EOAD cases are in people without the 3 autosomal inherited genes that have so far been identified with EOAD and there is linkage to suggest that families with multiple LOAD cases frequently account for members with EOAD). I’m not a hypochondriac and prior to this had a blessedly thin medical file free from head traumas and serious injuries or diseases. If anybody has a personal recommendation for an early onset Alzheimer’s disease specialist in New York City please give it to me. As you can tell, I’m feeling desperate and so tired.  Every day at work is a terrible overwhelming struggle and the strain on my loved ones is already considerable.  Reaching the end of my tether and I know that this thing is only just getting started. There’s gotta be a great Alzheimer’s early onset specialist in New York City that somebody can recommend.

Michael Ellenbogen

I asked my friend and should have some answer for you before the end of weekend.

You may also want to read my book.  

Michael Ellenbogen

Liana Apostolova is running a studyy looking at Early Onset AD that is not familial

The info for the site in NYC is listed below

Columbia University    Recruiting
New York, New York, United States, 10032
Contact: Betina Idnay    212-342-5615    [email protected]  
Principal Investigator: Lawrence Honig, MD, PhD     

Name of the study is

Longitudinal Early-onset Alzheimer's Disease Study Protocol (LEADS)

Web Site

https://leads-study.medicine.iu.edu

Best
Dave