Does diagnosis have to take more than a year!?!

Kris Hervert

I'm 51, I saw my primary care doctor last year in June because I had noticed some strange things.  My vocabulary has diminished, my reading comprehension has decreased, I have to park in the same place when shopping or I can't find my car, I sometimes forget where I'm going or when running errands I drive to the wrong places, and other oddities.  He completed a physical exam, he knows my medical history well and he told me he thought it might be early onset alzheimer's.  He referred me to a neurologist who has done EXTENSIVE blood work, three different times.  I completed a sleep study and 4 days of neuropsych testing.  They still think its EOA.  SO they referred me to another neurologist with more experience with Alzheimer's but it's not his specialty.  There is also a 10 MONTH wait to get in.  In January I was able to schedule an appointment for the middle of October. 

Does anyone know of a good doctor who truly specializes in dementia?  Early onset if possible.  I don't care where it is at this point.  Somewhere in the middle of the US would be great, but I'm willing to travel.  I have family in the Kansas City area, so that would be ideal, but I don't really care when it is.

Thank you for any help you all can offer!

Michael Ellenbogen

I wil check and get back to you. What city?

Iris L.

You can also call the Helpline (1-800-272-3900) and ask the Care Consultant for the location of an Alzheimer's Disease Research  Center near you.  Take your results.  It took me two years to get a diagnosis of cognitive impairment not otherwise specified.  Ask about Exelon patch.  It may help with your memory. 

Iris

Michael Ellenbogen

I meant to say state. I will only monitor this two more days. 

Jo C.

Hello Kris, and a very warm welcome to you.  I do find myself wondering if in addition to all the labs, if the Neurologist also ordered an MRI to rule out other causes for the challenges you are experiencing.   I can well understand the concern at having to wait so many months just to gain an appointment; it is good you are being proactive on your behalf.

 As Iris suggests, do use the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900.  If you call ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much helpful information and can often assist us with our problem solving.

J.

Kris Hervert

I live in Nebraska, but I’m considering traveling to the 

Kansas City area as I have family there.

Kris Hervert

Through some more research I have found that Kansas University has one of 31 Dementia research and treatment centers in the US.  I’m talking with my current neurologist about the referral.  I’m hoping this will be the final step to diagnosis and I can get on with focusing on how to improve my life, what I can do to keep what I have and not decline any quicker than necessary.  Thanks everyone for your suggestions!

Iris L.

Good for you, Kris.  Read about the Mediterranean Diet and Best Practices to prolong the early stages.

Iris

Michael Ellenbogen

You may want to check this guy out and ask him for a recommendation? You are welcome to mention my name.   Muhammad Nashatizadeh [email protected] He may be the right person for you. Just let him know the details about you. 

jfkoc

Agree...Look at Kansas.

Arrowhead

There is a blood test called the Precivity AD test, developed by C2N Diagnostics in St Louis. Patients can get results in just days. This test is intended for anyone over the age of 60 and it's aimed at those who have memory or cognitive issues. It wouldn't hurt to ask about it.

Iris L.

No one test can make a diagnosis of Alzheimer's Disease.  The diagnosis needs to be made in conjunction with other factors. 

Iris