No idea what to do next…

spreusser

Hello, my name is Sandy and I am turning 51 years old this coming spring. I have not actually been diagnosed with early onset Alzheimer’s or dementia, but I am in need of help in knowing whether I should accept what my neurologist is telling me or if I should be more aggressive in figuring all this out on my own. A little less than a year ago, I began noticing small things happening that were somewhat concerning. I would often be driving home, a route I’ve taken hundreds and hundreds of times, and I would suddenly realize I had either missed a turn and was completely lost or I would have a moment where although I was on the correct way home, I didn’t know which part of the route I was actually on. I started to begin noticing other things happening. I have been writing novels professionally for the past 10 years. Within the past year, I have noticed that I struggle to find the correct word to describe something even though I know that word exists and I can see it in my head. I am also making significantly more typing errors than I used to, so it takes me considerably longer amount of time to complete a novel. Other instances of odd behavior are things like forgetting conversations I have apparently had with people, putting things in my Amazon shopping cart that I don’t remember putting there and would never purchase in the first place, and needing to document every single appointment and task. I need to accomplish on my calendar so that I won’t forget about it. I can literally have done a task an hour earlier and when someone asks me if I did it, I will not remember. I do suffer from depression and anxiety and have recently Gotten on the correct dosages of antidepressants to manage by the day-to-day aspects of my disease. I have been taking Ambien in the past, but I’ve recently got off of it. I continue to take Xanax, not only to help me sleep, but to deal with anxiety attacks. Under normal circumstances, I would write all the this stuff off as aging or perimenopause, but I have a family history of Alzheimer’s in my immediate family. My maternal grandmother had Alzheimer’s. My mother passed away four years ago from FTD. I believe she was officially diagnosed in her early 70s, but that some family members had noticed changes in her earlier on. So because of that, I went to see a neurologist and explained all of this. I had the short test which I believe is related to cognitive function, and I passed it with a score of 30, which was apparently the top score you can get. However, I pressed to have an MRI done. Those results were read by the radiologist last week. It showed that my brain volume was in the 9th percentile. The lowest volumes affected were my hippocampus and occipital lobes. There was another finding that was considered prominent for my age range but I don’t recall at the moment. I waited to hear back from my neurologist once she read the results, however, I didn’t hear anything for days and finally after playing the squeaky wheel, I got a response. The response was that my MRI did not show signs of a brain bleed or tumor (which I hadn’t even suspected in the first place) and was told that she would go over the MRI volume loss information with me at our next appointment which is four months away. While I understand that my symptoms can be caused by a multitude of things, I watched what my grandmother and my mother went through and the toll it took on our family. I am the kind of person who needs to understand the answers to questions and not just blindly follow what I am told. I researched what the radiologists impressions were and although I know the Internet is not a good source of information, it is all I have at the moment. Honestly, if I had no family history of this, then I wouldn’t even be concerned. But I also refuse to be passive about my own healthcare. The question is, what do I do next? I am on the affordable healthcare act since I am self-employed so I have to pay for everything myself starting 1st of January. It also takes a considerable amount of time to even get into see these types of specialists. I tried calling the Alzheimer’s Group for the state, but they really didn’t have any resources for me. I also called the most well-known hospital/clinic system memory care program to see if I could talk to someone there. That group will not take anyone under the age of 55. so I literally feel more alone than ever and I very well could be overreacting, but there has to be a way to know for sure. I have been dismissed by medical providers too often to not recognize that patients typically are nothing more than case numbers and the goal is to get them in and out of the office as quickly as possible so the next case can be seen. Anyway, I apologize for the long explanation, but I wanted to learn from people who might have been in a similar situation or, at this point, take anyone’s suggestions for what path to take next. By the way, the neurologist called me today after I sent her a scathing message about her eventual, blasé response to me and the radiologists findings. By then, I had already lost my trust in her, and when she could not answer my specific questions about the symptoms I was experiencing, she said that she would refer me for more cognitive testing if that was what I wanted. What I wanted was someone who would not only have the time, but take the time to explain things in a reasonable manner rather than just pat me on the head, suggest I live a healthier lifestyle and tell me everything was fine and to come back in four months. Again, any feedback or thoughts would be appreciated and thanks for listening.

jjackson

Hi, Sandy. Sorry you’re going through all that you are, and how hard you’re having to shout to be heard. I’m glad your neurologist will refer you for more cognitive testing. Hopefully that’ll be a comprehensive neuropsych exam. I took that after having olfactory hallucinations for 2 years, along with many incidents such as you mention, and also a family history of ALZ. I had to request a copy of the results as they were not provided, just a short message from my neurologist that I had mild “memory” impairment and she would prescribe FDA approved memory drugs if I wanted them. The actual results stated I have MCI and that a PET scan is warranted-a bit different than just offering “memory drugs!” Well, this wheel squeaked loudly, and my neurologist is now referring me for a PET scan and scheduled a video appt in 3 weeks to discuss the exam results and additional next steps. The moral here: keep shouting to be heard!
BTW, I’m also a writer and find myself losing words. My PCP wrote off my olfactory hallucinations 1 1/2 years ago, at 61 yo, as being COVID related (?). I understand what it’s like to not be heard!

Please post updates as available, and complaints as needed. This is a wonderful and supportive community.

Iris L.

Welcome Sandy. You wrote a very nice introduction. I too began having memory problems at a young age, age 37, initially diagnosed as being related to anxiety/depression. Yes it is true that anxiety and depression can be dementia mimics. This is why extensive neurocognitive testing is indicated, to determine where there are deficits, if any.

My neurologist was initially somewhat dismissive at my first visit, but after my neurocognitive testing done by a neurocognitive psychologist showed significant deficits, he took me more seriously. So, yes you should get extensive testing. Keep searching for the appropriate specialist to do the testing.

Usually the purpose of the MRI is to search for medical causes of memory loss, such as a brain tumor or evidence of stroke. Some MRIs will report nonspecific hyperintensities (white spots), this is what my MRIs showed.

Since you have a history of depression and anxiety, aggressive treatment is indicated. You say you recently got on the right antidepressant. You should see improvement by at least six weeks, because it takes time for psychotropics to reach therapeutic levels. If there is no improvement, you might need a different antidepressant, or sometimes two antidepressants may be required.

Also note that ambien and xanax are benzodiazepines, which have memory loss and other cognitive deficits as side effects. If you are concerned and it sounds like you are, you should probably avoid all benzodiazepines. Read the Beers List for older adults. Consult with your prescriber before you stop or change any medications.

There has recently been available some blood tests regarding the diagnosis of Alzheimer's Disease. You can read about them and ask your neurologist. A member posted about these tests on the other board.

In the meantime you can try to use work accommodations to help your functioning. Visit www.askjan.org.

Also, use Best Practices which are lifestyle habits that can improve functioning. Mediterranean diet, exercise, use your brain, socialize, get good sleep and avoid stress. BTW, have you had a sleep study to search for sleep apnea?

I was prescribed Exelon patch and Namenda, which I continue to use to this day, they help my memory and my speech. After all of your testing has been completed, you might ask about them. Also ask about the PET scan that can search for amyloid in your brain.

Read a lot of threads on both boards to see what others have gone through. Please keep us updated. Call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant if you need help finding local resources. Keep being a squeaky wheel so that you can get answers!

Iris

allit

Hi Sandy, thanks for sharing your experience with us.

My wife was 65 when she discussed memory concerns with her primary care provider. That doctor ordered MRI and referred to neuro geriatric psychiatrist. MRI didn’t show any signs that would account for memory concerns and all routine lab work came back ok. It took about 3 months to get into the neurologist. Once there they did cognitive tests and the gene test, ordered lumbar puncture and blood tests for amyloid and TAU. The official diagnosis of MCI with Alzheimer’s pathology happened in May. So that’s about 8 months to diagnosis.

I’m 55 and just talked to my primary care about memory issues. We talked about B12 and D3 levels and hormones and depression/anxiety. But she never brought up the possibility of MCI or early onset Alzheimer’s. My B12 and D3 was low so I’m going to address that first. Then address anxiety. If I still feel like I’m concerned about memory issues, I’ll prompt a discussion about MCI.

So basically, two different patients, different ages, different doctors resulted in different medical choices. I’m thinking that things are so new in the medical world about MCI and new meds for Alzheimer’s that the medical field isn’t up to speed yet. We have to be advocates for ourselves and others.