Lumbar Puncture?

KCunningham

Good evening everyone.

My mom was diagnosed today with Alzheimer's. But she doesn't fit the diagnosis 100%. The part of her brain that should be damaged/shrinking seems to be fine on the MRI. So the doctor suggested a lumbar puncture to 100% confirm the diagnosis. I know the procedure is painful and causes issues, so I'm not sure I want her to go through it. Are there any pluses to having a 100% confirmed diagnosis? Can she get more help through insurance or anything? Has anyone heard of a doctor suggesting this as well?
Thank you~

Jgirl57

I know not everyone shares my opinion, but I was glad my HWD/Alz had the lumbar puncture . He tolerated it very well and cooperated with the post procedure instructions .( I thought I have given birth, he can handle a lumbar puncture :) ) When the results were in and “pathology consistent with Alzheimer’s” was noted , it made me a better caregiver and truly accept what was ahead of us.

M1

Most people tolerate it well, but i would ask one question: would it make a difference in her treatment? It might under two circumstances: first, it might show another potentially treatable condition, such as Lyme disease or syphilis (unlikely), or even cancer (also quite unlikely with normal MRI); second, would confirming Alzheimer's make her eligible for one of the newer treatments like Leqembi?

doesn't surprise me that the MRI was unrevealing. Imaging is more to rule out tumors and strokes than anything else.

Anonymousjpl123

@Victoriaredux you nailed it. What I can say is that my mom had the procedure and did not find it in any way painful or traumatizing.

Also, while it can confirm NPH, what it really confirms is whether the person will be responsive to the shunt.

However, what I wish they had done is check for both biomarkers and NPH shunt responsiveness. That is done by a before and after walking test to check changes in gait.

Finally, while it can show Alzheimer’s biomarkers, I wouldn’t do it unless there’s a reason, like M1 says, which is to get her newer treatments. My mom’s highly skilled neurologist (took a while to find one) felt there would be no benefits to a 2nd lumbar puncture to confirm alz since she already had one (and she is fairly certain of diagnosis), but thought it would have been good to test for both NPH and biomarkers the first time. So if she does get one, ask if they can check for both.

MN Chickadee

My mother had a normal MRI in the beginning. She herself was reporting memory loss to her doctors and looking for answers. All imaging was normal even though she did have memory loss discovered in the lengthy neuro-psych evaluation (which is verbal/written testing, not imaging.) Even then it was still hard to get a diagnosis because she was young (late 50s.) I'm sure years later when the Alz really took hold it would have shown shrinkage if we had repeated it. She didn't do the lumbar puncture so I can't speak to that. None of it will really change treatment or trajectory unless you are looking at clinical trials or Leqembi, or if they have reason to suspect FTD or Lewy Body since sometimes folks don't tolerate the same drugs with those forms of dementia. Those forms often have different warnings signs and reasons to suspect a non-Alz diagnosis. Vascular dementia behaves similarly to Alz in many ways. Much of the imaging and blood work they do is to rule out other treatable conditions. The Alz diagnosis comes by process of elimination and often cannot be 100% confirmed until an autopsy.

ButterflyWings

@KCunningham what @Jgirl57 said. DH (pre-Anosognosia) wanted to know for sure and MRI showed nothing, but something was clearly wrong. So he wanted every possible test hoping to rule out the thing that took his dad. But that was not to be.

I will never forget the look on his face the day he got the news. The results left no doubt and oh, did my heart break for him. He looked frozen to his seat in the Drs office, totally comprehending at that time, exactly what it meant. I think his future flashed before his eyes and I can’t even imagine the pain he felt in that moment.

Benefit? The official diagnosis helped us understand the urgency of getting affairs in order and of supervising DH re: finances (too late, serious damage had been done), and driving etc.

The only negative that I recall from the procedure itself is DH got a rare (for him) severe headache afterward. We did not know extra hydration was needed, proactively, to help prevent or at least minimize that. (I think that’s what the nurse told me later).

It is risky but routine so we had no issue with the procedure itself and many women have had similar invasive procedures with childbirth as someone said.

Arrowhead

My wife had it and it confirmed her diagnosis.

Anonymousjpl123

Just to clarify, too: many times NPH comes with other forms of dementia, and is still an important piece of the puzzle. A shunt can help, especially in earlier stages.

To me, the lumbar puncture was worth it, imperfect as it was. I don’t see a lot of folks on here who have NPH as part or their diagnosis, but it’s pretty key to this puzzle. The research below shows a shunt (the only treatment for NPH) can help regardless of whether there is other forms of dementia. I wish my mom would have gotten it but she was very clear she wanted no part of it.

https://pubmed.ncbi.nlm.nih.gov/10811706/