Diagnosed on Paper?

SeekingUnderstanding · September 23

Has anything like this happened to anyone else?

I am 54 and have been recently diagnosed with Mild Alzheimer's with Mood Disturbance. I've been struggling with cognitive impairment for a few years but it's always been contributed to long covid.

I started seeing a new neurologist several months ago and at my first appointment I was told my diagnosis was mild cognitive impairment not dementia until we had more tests. My husband has been with me to all the appointments.

The tests……My MoCA score was below normal and I have a college degree and that seemed to make score look worse, my neuropsych test couldn't rule anything in or out, I've had so many blood tests to rule everything else out and my MRI was unremarkable. I don't carry the gene and I did not test positive for the tau test. But at my most recent appointment my neurologist didn't come out and say you have Alzheimer's or this type of dementia, but they put it in my chart that I do have Mild Alzheimer's with Mood Disturbance.

Reading the notes from my last visit, it looks like they are trying to determine if I have Lewy Body Dementia. My Datscan results were abnormal and I have many of the symptoms that don't necessarily overlap with Alzheimer's, like dysautonomia. I understand that it takes longer to get a diagnosis for LBD. My neurologist wants to see me in 3 months and wants me to keep a symptom journal. I am currently on dementia medication.

I took care of my Dad, who had vascular dementia until he passed away 3 years ago. It was the most heart wrenching, traumatic thing I've ever endured. I still struggle with him being gone.

I'm very aware of how horrible this disease is and I don't know if I have a valid diagnosis. I'm not doing so great mentally but I do have a great psychologist. Do I have a diagnosis? Do I not have a diagnosis? It's a rollercoaster that I want to get off of. As much as I don't want this diagnosis, instinctively I believe it's correct.

Has anyone experienced anything like this? Thank you for letting me be a part of this group.

Constance1 · September 25

I am sorry you are going through this however you will find support on the discussion board.

My journey started in 2018 after a shoulder surgery. I started having parkinsonism symptoms on my left side and mild cognitive issues. I have had REM sleep disorder for years. I had the full neuropsych evaluation and was diagnosed with mild cognitive impairment. I met with the memory doctor in fall of 2019 and was diagnosed with possible Lewy body dementia. I immediately started on rivastigmine at the lowest dose and it has helped to manage symptoms over the years, and I am now at the highest dose.

I do not have a firm Lewy Body diagnosis because two skin biopsies have been negative. My datscan 2019 was negative and I have not had another. I stayed at the mild cognitive impairment stage until about two years ago. It was changed to mild dementia/possible Lewis body dementia.

A few months ago, a spinal tap was done to check for Alzheimer’s and it came back positive for early onset, Alzheimer’s. So the new diagnosis is confirmed early onset Alzheimer’s with possible co pathology of Lewy body dementia. Because I don’t have a firm bio marker for Lewy Body, it is still considered possible/probable. However, based on all the clinical symptoms, I feel certain I do.

I share all of this to let you know that the progression has been slow, but with fluctuations.

I empathize with you in not having a firm diagnosis. It is hard, not knowing definitively. My neurologist has continued throughout the years to have me avoid antipsychotics and anticholinergics as they can cause Lewy body symptoms to worsen and I have listed those as allergies.

I do know there is a spinal tap that can be done to check for Alpha Synuclein, that may help to get a more definitive diagnosis. That was not done when I had the spinal tap for Alzheimers.

Great idea to keep the journal to document your symptoms. This is very useful when you meet doctor to give specific examples of what you are experiencing.

I have written a lot, and I don’t know if any of it will be of help to you. But know that you are not alone.

SeekingUnderstanding · September 25

First, I'm so very sorry you are going through this. And thank you for your input! Can you tell me how the memory doctor helped with a possible diagnosis?

persevere · September 25

I would second the notion of having a lumbar puncture to at least solidify the Alzheimer’s diagnosis.

Constance1 · September 26

https://alzconnected.org/discussion/comment/283053#Comment_283053

The memory doctor spent four hours with me going through all my symptoms and looking at the results from the neuropsych evaluation. My symptoms included rem behavior disorder, some auditory hallucinations, and visual hallucinations of seeing shapes on the wall. Depth perception issues, fluctuating cognition, parkinsonism symptoms on left side which included reduced left arm swing, and has now progressed to mild stiffness and neck and arms.

SeekingUnderstanding · September 26

https://alzconnected.org/discussion/comment/283089#Comment_283089

I also have documented arm swing, auditory hallucinations and I see squiggly things and shapes on the wall at times but I thought it was an eye thing that was normal. And I've mistaken shadows for people but also thought this was common. Cognitive Impairment, abnormal Datscan, balance and gait issues. Is there a biomarker other than the Datscan?

Thank you

Constance1 · September 26

Biomarkers for Lewy Body - skin biopsy, and spinal tap. I have read the skin biopsy is less accurate than the spinal tap.

I wish I would’ve had the spinal tap to check for Lewy Body. March of this year, had a blood test to check for Alzheimer’s and it came back positive but the doctor thought it could be a false positive. That is how I ended up getting the spinal tap for Alzheimer’s. However, they failed to have Mayo clinic (where the spinal fluid sample was sent for testing) also check the sample for Lewy Body Dementia.

If you and your doctor decide to do a spinal tap. From my experience, I would recommend that they test for both types of dementia. Not providing medical advice. Just thinking if there is confusion about which type of dementia you have that may provide the information you are seeking.

The other piece of information that I will share with you that was of interest to the memory doctor/neurologist when I first met him in 2019 - my mother was diagnosed with Lewy body dementia when she was 77 years old - diagnosed at the Cleveland Clinic. She passed away a little over a year ago. Her progression was slow, and she was still on outings and engaging in activities until the last year of her life.

Diagnosed on Paper?

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