I am still waiting for the actual diagnosis

What diagnostic steps have you gone through so far?

In my case it was a sleep disorder/stress/mental health/lifestyle issues. My brain mri, sleep eeg, Alzheimer’s blood tests came out normal. By the time I got the neuropsychiatric exam I had mostly recovered and could feel that I had. But I had to take major steps to change things.

I am still having a vascular issue investigated that could also be contributing but the process of seeing specialists and getting answers can be frustratingly slow.

It took me 3.5 years from when I first noticed memory issues and mentioned it at my primary doctor’s appointment, about a year after I retired from teaching at 59. Several months later I had my first neuropsychological exam. I was diagnosed with mild cognitive decline (MCD). Since then I’ve had several MRIs, dozens of blood tests, a sleep apnea test, and a CSF draw for a battery of tests. When a ViSITING doctor (my new neurologist, whom I only saw once Dec. ‘24, then my next two appointments were with her NP, was on maternity leave for September , so a visiting doctor read my chart and gave me my diagnosis at the age of 63 +9months.. So, the waiting game is horrid. I’m sorry you are going through that process. It teaches you lessons in patience and humility.

Trust yourself. Regardless of what they come back with, if you feel it might be more, get a second opinion. I almost blew this off because my original Neuro said it was likely normal age related decline. If I hadn't pushed it (well my wife and sister pushed it), I would have gone on thinking I was ok, when in reality, my head was a mess. Best wishes for you, brother.

I am a physician who was diagnosed about 18 months ago with early onset Alzheimer's at the age of 59. Prior to the diagnosis I underwent about 12 months of diagnostic testing including office based memory tests and visits with neurology and psychiatry. I was deterred by my insurance company not approving certain tests that were needed. To keep from being too long, I had a spinal tap which was considered "The Gold Standard." My results were equivocal. Resulting in my Neurologist trying to get insurance to approve an Amyloid PET scan which was denied. Then the blood test for Alzheimer's was denied. I was fortunate that I had a contact with the head of the University of Pennsylvania Alzheimer's department and he got me in about 3 weeks after I contacted him. At my visit I had about 45 minutes of memory testing and my family was interviewed by a Neurology Fellow and I was then interviewed by him. Ultimately after about 90 minutes I met the primary physician and within about 3 minutes he said I had Alzheimer's. The story of my noticing problems and ultimately ending up with the final diagnosis is long and if you are interested I have a podcast on YouTube which can be found by searching Friends with Medical Benefits. An old friend and I discusss our rekindled friendship over his treatment for colon cancer and my newly diagnosed Alzheimer's. The first podcast focuses on my challenge finding out what was going on with my memory and trying to get a diagnosis if you are interested. I share this because, I want you to know you are not alone and it is challenging. It can be frustrating even for me as a retired family physician who understands the system and still had to fight to get a diagnosis. More of the story is the fight to get treatment which can also be found on our YouTube site. I would be happy to try to help with any specific questions you may have but as you will quickly see everyones journey can be very different depending on multiple variables including insurance, providers, access to specialists, support etc.