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Trouble getting a diagnosis
Edalynne
Posted: Monday, January 28, 2019 7:54 PM
Joined: 8/21/2018
Posts: 2


I'm wondering if anyone has had difficulties in getting a diagnosis of early onset Alzheimer's. My husband is 51. I began to be concerned about his behavior in August of last year. He seems to be really struggling. He asks for the same information over and over. He regularly forgets or mixes up words. He sometimes gets irrationally angry over seemingly trivial things. He put cat food in the oven and has done some other strange things. There have been several instances where he has shown very poor judgement. When I began to research early onset Alzheimers, I read the list of ten symptoms and he has 8 of them. Our primary care ordered bloodwork and an MRI (all negative results) then referred us to a neurologist. She said she saw no signs of dementia (in the 20 minutes we spent in her office). She feels he's just depressed. We have an intake appointment with behavioral health in a few weeks but depression just doesn't feel like the right diagnosis to me. 

He has diabetes and his blood sugar, while under control now, was poorly controlled for many years. He also has extremely low vision due to complications from diabetic retinopathy but these also do not seem to account for the cognitive and behavioral changes I've seen.  We have been married  for 25 years and he is definitely no himself. 

Did anyone else struggle to get a diagnosis? Or had a similar experience. I'm a good advocate but I'm not sure what direction to go in next. 


Mimi S.
Posted: Monday, January 28, 2019 8:29 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world Edalanne. I'm so glad you found this site.

Unfortunately, your experience is too common even from neurologists. ASAP you need to call a good texting site and 20 minutes is not sufficient. Usually the best place to look is a large University or medical Center with a neurology Dept. Call on your own. Depending on your insurance, you may get an appointment without a referral. From your library ask for a book by Doraiswamy and Gwyther. The first part of the book describes what any believable diagnosis must consist of.

An appointment may take 3 to 6 months, but in the long term that's OK.

Meanwhile I'd suggest getting his life style to fir the Best practices life style that many of us people with dementia (PWD) advocate. Research has shown it may prolong one's stay in the earlier stages.
1. Take meds when and if prescribed.

 

2. Increase physical exercise. One wants to get the heart puping at a faster than normal rate for a bit. Such actually builds new brain tissue.

3. Cognitive activities. A variety is best. The aim is to stimulate, not frustrate.

4. Mediterranean Diet (check on-line). No smoking. Little alcohol.

5. Socialization. We all need face to face contact with others daily. However, we usually do not tolerate noise and/or large crowds.

Do keep us informed.


JoseyWales
Posted: Sunday, February 3, 2019 12:00 PM
Joined: 5/22/2016
Posts: 187


Getting a diagnosis for DH was a nightmare. It took about 7 years I think, from the first visit to a neurologist. DH was about 45 when we knew there was some kind of problem. Testing twice with a neuropshychologist (not covered by insurance). 5 different neurologists. Two different psychologists. Every single time we were told it was depression and stress.

It just took time for him to get bad enough for someone to say -hey, this isn't right in a 51 year old. Then a referral to a big medical school, and finally a tentative diagnosis.

It's his age. It's super rare in someone our husband's age. It USUALLY is something else. The only consolation I have is that, unlike cancer, there really was nothing I could do to stop it.

 


MN Chickadee
Posted: Friday, February 8, 2019 3:47 PM
Joined: 9/7/2014
Posts: 901


My mother was in her 50s when she reported cognitive issues to her primary care doc EVERY TIME SHE WENT IN for a few years. It was also brushed off as stress from work and depression. She also had an MRI early on which apparently showed nothing of importance. No one followed up for a long time. Years later she was diagnosed with Alz and is in the late stages now. It's terrible this goes on so much and I do wonder what is up with EO falling through the cracks so much.  I would keep pushing and get a second opinion, preferably from a neurologist at a large medical center or one with lots of experience with dementia.
alz+
Posted: Saturday, February 9, 2019 10:28 AM
Joined: 9/12/2013
Posts: 3549


This is typical. Then they give us drugs contraindicated for ALZ and problems get worse.

Like the ativan and klonopin and some anti depressants.

I was surprised how I kept saying my grandmother and father had ALZ and they went straight to middle aged woman depressed and anxious - for NO REASON.

I do benefit from a very small daily dose of Zoloft.


EdiBug
Posted: Saturday, February 9, 2019 11:08 AM
Joined: 12/28/2018
Posts: 21


Edalynne: Getting a diagnosis was definitely a process. There are so many things that can cause memory/confusion issues that have to be marked off the list first (especially when the patient is so young.) My DH started showing signs at age 48. He was seen by his Primary Care doc who had known him for 25 years and knew what DH "normal" looked like. So, even though his test scores were in normal ranges, the doc still believed me when I said something was off. It took almost four years of looking at depression, low Testosterone, auto-immune diseases, etc. before we were referred to UCLA for very extensive memory testing including 6 hours of Neuro tests, MRI and PET scans. He was diagnosed with EOAD at the age of 52. 

Here's what advice I would offer up to you. Trust your instincts! You know him best  and you know what his normal looks like. I started keeping a binder with notes from doctors visits, test/lab results, daily observations, etc. and took it with me to all appointments. It helped to keep things straight and to reaffirm where you seen the changes in you DH. Good luck to you in the process!


Andy61
Posted: Saturday, February 9, 2019 1:14 PM
Joined: 12/17/2018
Posts: 68


I was diagnossed with amnestic MCI 2 years ago. My first 4 hour Neuropsychological testing showed severe problems with memory, but all other areas were ok. My Neurologist said it could be stress, anxiety, or depression, none of which are issues for me. Because I was 59 when told I have amnestic MCI, they felt it was not early stage dementia. I have had a full workup of medical tests, psychological test, all show me to be ok, just bad memory. My MRIs have shown evidence of small vessel disease and plenty of white spots on my brain, and more than usual for my age. A few months ago, I had an additional lengthy Neuropsychological test, and this time it showed some problems in my executive function, and problems with memory storage and retrieval. Yet, my Neurologist still does not think its a etiology that leads to dementia.

My symptoms match up well with vascular impairment, even though I have not had any strokes or mini strokes, but do have the Small vessel disease history.

Its very frustrating knowing there is something very wrong with how I think, cant remember most of what I read, trouble following along at times with TV shows...etc...yet no diagnosis of anything more serious yet. Of course I hope I never get DX, but I feel like that is where this will eventually lead.


Iris L.
Posted: Saturday, February 9, 2019 6:23 PM
Joined: 12/15/2011
Posts: 16197


You may want to read about leukoaraiosis, which involves low blood flow to the small vessels in the brain.

Iris L.