Lumbar puncture?

jehjeh

I have read multiple posts in which loved ones mention their PWD getting a lumbar puncture as a diagnostic procedure for Alzheimer's. My question is this? Isn't that terribly painful and is it worth putting my LO through for a definitive diagnosis?

Jgirl57

hi jehjeh, for my HWD/alz, he did well with this test. I hydrated him really well the few days before the test date . They numb the area (sort of like getting Novocain at the dentist) first and then do the puncture. Other than some pressure my husband did not feel anything and the staff were great about talking him through it. It was pretty quick. Once home I put him to bed and he just rested. I googled a bunch and that helped me get information in addition to what the neurologist office gave us.

Bluebird

My husband and I both tried to convince ourselves that the doctor was wrong and he didn’t have Alzheimer’s. We requested that he have a lumbar puncture so we would know for sure whether he had Alzheimer’s or not. The test showed he definitely has Alzheimer’s. I am glad he had the test. There are days when he seems normal and I go back and relook at the test results to reconfirm his diagnosis in my mind. Because I’m the type of person who try's to avoid anything unpleasant, the lumbar puncture was one of the best things we did.

My husband didn’t have any pain or problems with the lumbar puncture.

It depends on what kind of person you are as to whether having a lumbar puncture is worth it or not. If like me you’re not sure if a diagnosis of Alzheimer’s is correct then having the test is worth it. If there is some question as to what is causing the memory problems then it’s worth it. If you feel uncomfortable having your PWD get a lumbar puncture then don’t do it. There is a blood test, that is in clinical trials and should be available soon, that will test for the proteins that cause Alzheimer’s. If your unsure about having a lumbar puncture you could wait for that test when it becomes available.

SDianeL

Sadly, a definitive diagnosis won’t change the outcome. Unless your LO qualifies for a clinical trial where a diagnosis is necessary I wouldn’t put my LO through the test. I would talk to the Neurologist and weigh the pros and cons.

Carl46

My wife had a lumbar puncture for a completely different reason. It confirmed Alzheimer's as sort of a side result, but that was no benefit because we already knew what she has. It was done in the neurologist's office and was completely painless.

I wouldn't do a puncture just to get a diagnosis. If doctors have ruled out treatable causes of dementia, like brain tumor, the diagnosis of AD is made by default. If I were you, I'd save my money.

LBC83

I had a lumbar puncture to confirm AD. For me, it was no big deal. It was uncomfortable, but not painful. After the procedure, I was required to lie on the table for 30-minutes or so (that was part of the standard procedure), and I fell asleep.

I had the option of a lumbar puncture or a PET scan to confirm AD. There are pros/cons to the two approaches. Based on the clinical trials for Leqembi, they have found that those with low tau levels (as measured by PET scans) had a good chance of halting cognitive decline when taking the drug. I didn't know this when I chose a Lumbar puncture. Alas, I haven't found an easy way to convert lumbar puncture results into the units used for PET scan results.

Soon after my confirmation of AD via the lumbar puncture, I started on Leqembi. It has been smooth sailing for me, with zero reactions to the drug.

I signed up for an exploratory clinical trial (no drugs involved), where I have additional memory tests & a second lumbar puncture coming up next week.

Now-a-days, there is a 3rd alternative to lumbar punctures or PET scans to confirm AD - a simple blood test. There are several available now, but as of yet none have FDA approval (meaning you would have to pay the full cost as they wouldn't be covered by insurance).

LBC83

Alzheimer's Weekly recently had a nice article about the 5 blood tests now available to test for AD:

https://alzheimersweekly.com/5-alzheimers-blood-tests/

janeedee

My DH had the blood test in Jan 2024 and it confirmed Alz. The same test showed he did not carry the Alz gene. Completely painless.

PlentyQuiet

Dh had the lumbar puncture to get a firm diagnosis. Early Onset is horrible, but it allowed us to get SSDI pretty quickly in place. If you need a diagnosis for benefits I would consider it.