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Neurologist update(1)
Posted: Saturday, January 13, 2018 12:08 AM
Joined: 6/3/2017
Posts: 78

went to nuro psychologist he stated don’t let anyone tell you this is mental. You have short term memory loss and huge problem with spatial vision. He is sure a neurological problem. Recommendations keep social keep active. 

Neurologist reads report says you don’t have Alzheimer’s so that’s good. She says I have to limit my driving ask what that means no answer. She refers me to a nuro optomologist and says see a psychiatrist for anxiety/ depression. So I say your handing me the crazy card. Doctor says well it not Alzheimer’s so there is no treatment. 

Needless to say left very frustrated. Called nuro psychologist he says continue seeing Dr like at Mayo or Cleavland center. Develop a team  look for a diagnosis. He is sure it’s neurological and anxiety because of not the other way around. 

Anything I figured out on internet is progressive. Spatial visual problems right hemisphere problems. No treatment for any of 5 possible DX. 

Sick of all this. 54 years old told to limit driving with no meaning to this. 

Posted: Saturday, January 13, 2018 9:19 AM
Joined: 5/20/2014
Posts: 4372

I was referred to neuro-opthalmologist also and had extensive testing. The end result was that there is nothing wrong with my eye's but something wrong with brain connection/communication to eyes. Neuro-psychologist is leaning toward LBD.  I've taken a vacation from seeing the neurologist and neuro-psychologist and all the testing. Haven't seen neuro-psychologist for over 2 years or neurologist by choice. I'm in no hurry to go back and have diagnosis changed or not. I'm just at the point now where it is what it's aren't for me (gave me awful side effects) and I'm not very good with best practices. I'm experiencing some significant changes with ADL's and visual distortions. 

The neurologist should have responded to your questions about driving. I would not go back to her! Stay local and try to limit to only driving in daylight. Take your time and stay safe. 

(((((((Msterry)))))) hugs

Posted: Saturday, January 13, 2018 10:20 AM
Joined: 2/24/2016
Posts: 1096


I would trust your neuropsychologist and do what he says.  Sometimes it takes a long time to get diagnosed.  Almost all of us have heard at some time before diagnosis that it is psychological, especially if you are a woman.  Time will tell.  But as in mine and many other's case, they were wrong.  Hang in there and keep us updated.  

Posted: Saturday, January 13, 2018 3:35 PM
Joined: 4/22/2017
Posts: 235

Come on, guys. Anyone who persistently has "spatial visual" problems or "visual distortions"  needs to undergo a driving evaluation or give up her keys. Yes, it's sucks but the risk to others is too great to ignore.

Mimi S.
Posted: Sunday, January 14, 2018 9:25 AM
Joined: 11/29/2011
Posts: 6500

Hi Mystery,

What a mixed bag ofdiagnoses.  My pinion is you need to get to a good diagnostic center.Are neither Mayo or Cleveland Clinic near you?  If not, check out the nearest large University or Medical Center. An appointment may take sevetal months.

Many docs will do/say anything to not diagnose a 54 year olde with dementia.

You said nothing about having one or two brain scans nor a series of blood tests. These are mainly to rule out other common causes of your problems.

Meanwhile get involved in Best practices, which many of us PWDs {people with dementia) feel have helped us stay in Early Stage longer,

1. Physical exercixse. Goslowly if you are a cpuch potato.  The goal is to increase the heart rate while exercising.

2. Mediterranean Diet. Limit alcohol.  No smoking.

3. Increase cognitive activities. You want to aim for activities

that make your brain work but not to the point of 


4. I crease so ialization.  However, be aware that a lot of noise or large crowds are not helpful.


Posted: Thursday, January 18, 2018 12:15 PM
Joined: 6/3/2017
Posts: 78

I’ve had lots of blood work MRI all show normal. MRI has some white spots she said probably from migraines. After last night am hanging up keys. 

 Very sad and stressed. Dr said limit driving. What does that mean. Since Christmas I’ve had two problems. Never saw a car thank God she was quick and slammed on brakes. Last night trying to turn left at a red light did see it turned red. Thank God other cars paying attention to me. Drove fine on highway from Florida to Kanas the problem seems to be local driving. So I guess no answers and I’m hanging up my keys at 54. Our home is in a rural area. I’m literally F&@&ed. Dr has no answers but can’t drive. So so upset.

Thank you for information 

Posted: Thursday, January 18, 2018 3:09 PM
Joined: 1/18/2018
Posts: 1

My husband was diagnosed with Mild Cognitive Impairment which is determined  by memory tests. If you have MCI you are 60% more likely to develop Alzheimers as you age.  The only way Alzheimers can be diagnosed is from a PET scan which insurance won't pay for because there's no treatment for Alzheimers or it can be diagnosed at death on autopsy. My husband had his first PET scan 16 months ago as part of a research study and he was told officially that he has the big ALZ. He also was told he probably had it way back when he was 54...just a very slow progression.  Luckily he was able to work until he was 60 and went out on LTD and SSD. He stopped driving over 2 yrs ago because he also has spatial issues.  On MRI they can see some changes in the R parietal area of the brain but it was the PET scan that definitively could see the amyloid plaques.  We've been told that with early onset, anything goes and that the symptoms of ALZ can vary from one to another vs. the typical symptoms you get when you're in your 70's or 80's.  It struck me in your posting that you may have similar spatial problems.  For Jim, he has poor peripheral vision on the Left. We just try to eat as healthy as we can and he is as physically active as he can be.  We have moved into a community where he can easily walk into town and we sold our family home to move into a townhome where there is a BR and bath on the first floor.
Posted: Thursday, January 18, 2018 5:42 PM
Joined: 9/5/2017
Posts: 29

I would never offer a diagnosis, but I will share that my DH had symptoms similar to yours a few years back and has recently been diagnosed with an atypical form of AZ called Posterior Cortical Atrophy. 


Mimi S.
Posted: Friday, January 19, 2018 7:57 AM
Joined: 11/29/2011
Posts: 6500

Abercrop: interesting. Sounds like a subdivision of Alz. There ids amalyoid predsent but in  DIFFERENT SECTION OF THE BRAIN.  MORE REASON FOR GETTING A PET SCSN THAT WILL SHOW THAT.


Posted: Friday, January 19, 2018 8:31 AM
Joined: 6/3/2017
Posts: 78

Thank you all for your kind words and suggestions. I am glad to see I’m not the only one. I will figure this out. All new right now. It’s like a death or something a big blow. It was hard when I couldn’t work anymore due to this memory issue I am was a registered Nurse. It took about one solid year to be ok not working. I Loved my job. This unknown memory issue has taken a lot from me the only thing to be thankful for is it has progressed slowly. It seems past 17 years poof couldn’t work went along though got better tried to work again about 6 years from start. Nope wrong then another decline. In my opinion held steady till past year or two now this. Ughhhh  Not being able to drive. 

Read I can’t reme her names post. Her suggestion. It just looks like no treatment for what ever this is. Just keep smelling the roses and continue on. 

Posted: Friday, January 19, 2018 10:28 AM
Joined: 9/5/2017
Posts: 29

 Mimi- There are no specific medications for PCA at this time. DH is taking AZ memory meds, as his memory has been impacted at his point. I don't think the meds are making a difference at.

Our insurance (TriCare) won't approve a PET scan and DH doesn't qualify for clinical trials that would include a PET as he has a pacemaker.  Bummer

I have a Stages of PCA document that I tried to load, but it is too large. If anyone is interested in that info, message me and I will be happy to send it your way. My email is

Also- there are a few PCA groups on Facebook. 

Posted: Friday, January 19, 2018 1:10 PM
Joined: 12/4/2011
Posts: 15472

Just adding a FYI...there a more than a few medically trained persons posting on the boards.
Posted: Saturday, January 20, 2018 12:41 PM
Joined: 9/12/2013
Posts: 3226

when brain stops processing visual info accurately driving becomes too difficult.

The anxiety as a passenger, and as a driver, was because my eye movements are slowed and I see things as coming at me from all sides due to peripheral vision loss.

I have very low expectations from medical world because they do not have an effective treatment. For some the drugs work wonders, for the rest of us we are reinventing our worlds.

The fundamental belief of medical world is destruction of our minds and identity. So if I had LOST my memory due to irreversible brain damage, how do I get it back when using CBD oil? Not possible.

There are now many doctors working with CBD who know dosage and forms of delivery. I am providing my local doctors with the info on what helps (CBD and GABA) and they are looking for the info they need to be able to prescribe for other patients.

Do not despair! that is the biggest waste of your time. People are working outside the medical view now for effective treatments and we can seek them out when ready.

about driving: traffic is your enemy. self driving cars coming, for now it is too hard to figure out the danger so plan to give it up. 

love and courage

Mimi S.
Posted: Saturday, January 20, 2018 2:02 PM
Joined: 11/29/2011
Posts: 6500

Unfortunately, most medical insurance won't pay for the PET scan.  There is some hope that Medicare soon will.

I too am unable to participate in clinical trials because of another neurological condition.

We don't know for sure if meds are working, since we don't know how fast we would ave progressed without them.  Some folks see an improvement in cognition after beginning such med. They know for sure.

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