vitamin B12 abnormally High

Calibird · September 5

Hello

I recently had a diagnosis changed from early onset dementia to Mild cognitive Impairment after psychological testing. a few weeks ago I had a lumbar puncture test done and some blood work. In my cerebral spinal fluid I had abnormally very high vitamin b12 and abnormally high Red Blood cells in my CSF as well. my blood work showed high vitamin b 12 as well. I am seeing the cleveland clinic and I've been doing some research on my own and from what I found it said a High Vitamin B12 in cerebral spinal fluid could possibly be Lewy Body Dementia. does anyone have any experience with this? I looked at some of the symptoms and it seems to fit for me. I have a follow up appointment about the results of the Lumbar puncture test and I was wondering if I should bring up this possibility. any advice is welcome. thank you.

LBC83 · September 5

To begin, I don't claim to be an expert on the topic of Alzeimer's Disease (AD) diagnosis. But I do have first hand experience, being diagnoised with MCI due to AD at the Cleveland Clinic. I have been on Leqembi since June 2024. The Clinic reviewed my lumbar puncture results which confirmed their preliminary AD diagnosis, due the levels of amloid ß, P-tau, and T-tau.

According to the Lewy Body Dementia Association website, on the Diagnosis & Assessment page, in the section DLB Diagnostic Criteria, "Indicative Biomarkers" for DLB are as follows:

Reduced dopamine transporter (DaT) uptake in basal ganglia demonstrated by SPECT or PET.
Abnormal (low uptake) 123iodine-MIBG myocardial scintigraphy.
Polysomnographic confirmation of REM sleep without atonia.

The only mention of B12 which I see is in a section regarding reversible causes of dementia (i.e. vitamin B12 deficiency).

https://www.lbda.org/lbd-diagnosis-assessment/

michael1994 · September 11

How are you doing today?? It's understandable you're concerned about your diagnosis and test results. High Vitamin B12 levels in cerebrospinal fluid (CSF) are not typically associated with Lewy Body Dementia (LBD), but rather low Vitamin B12 levels are linked to cognitive impairment and dementia.

Lewy Body Dementia Symptoms:

Fluctuating cognition, alertness, and attention
Visual hallucinations
Parkinsonism symptoms, such as slow movement, stiffness, and balance issues
REM sleep behavior disorder
Mood changes, like anxiety and depression

Given your upcoming appointment, it's a good idea to discuss your research and concerns with your doctor. Ask questions like;

What do my CSF and blood test results indicate?
Could my symptoms be related to LBD or another condition?
What further testing or evaluation might be necessary?

Preparing for Your Appointment:

Write down your symptoms, medical history, and questions
Consider bringing a family member or friend for support
Discuss potential medication interactions and side effects

Your doctor will evaluate your symptoms, medical history, and test results to determine the best course of action. Keep in mind that LBD diagnosis requires a comprehensive evaluation, including ¹:

Neurological and physical exams
Brain scans (MRI or CT)
Sleep tests
Other diagnostic tests to rule out other conditions..
I hope this helps..have a lovely day

vitamin B12 abnormally High

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