Diagnosis

CindyBum

Well. Spoke with the neuropsych today about my DWs evaluation last week. For sure dementia, though unsure what type. Progressing rapidly. Could be Alzheimer's, faster progressing Lewy Body or vascular. I know it may matter in terms of planning, but right now, even the thought of scheduling another MRI just bums me out. I know what this is and where this is going. Does it really matter that much that I need to know the specifics? Not a rhetorical question. I'd appreciate your advice.

I am surprisingly ok. I cried when I saw dementia in the report, but moved through that quickly. I feel this emotional release from pretending the last year and a half that it might just be MCI complicated by caregiver stress, anxiety and depression in my DW. It is what I thought, sadly, and I don't have to carry the stress of hoping against hope that it's something curable. Damn. This disease sucks.

spernstein

This disease does such! Think about wanting to know the dementia type and the MRI. I know I would want to know. It would help me to know a little of what to expect. Some days it's so difficult to hang on. Knowledge, however incomplete, helps me. Know that you are not alone on this horrible journey. When I want to give up, knowing that I am one of many caregivers experiencing the same behaviors etc. really helps me. My kind thoughts are with you. It seems good to have as much knowledge as you can get. Take some time to make your decision. It may become clearer to you.

M1

Glad you had the discussion Cindy. Personally, I would not pursue more tests at this point, I don’t see how it would change anything. There are no further treatment decisions to be made. I think you have to know what you would do with any resulting information before you ever order the test, and I don’t see how it would help you from this point forward. Why put her through it?

FTDCaregiver1

https://alzconnected.org/discussion/68593/diagnosis

Hello, for me it took over 2 years to get my wife's diagnosis. CAT and MRIs were asymptomatic other than atrophy. Psych exam was inconclusive as her agitation was so great, couldn't sit through it. Wasn't until we did a PET scan, sat with the neurologist, and saw imaging myself, with a clear diagnosis of EO FTD. Currently there are over 100 types of dementia, each different yet all fatal. For me, it was definitely helpful in knowing, so I could then ask better questions, research the specifics and eventually link up with other FTD caregivers in support groups or online forums like these and frankly advocate much better to address my DWs needs by getting the services she needs. Hang in there and much love.

trottingalong

Personally, I made the decision along with my DH (kind of) not to pursue any more attempts at diagnosis. I’m the type who researches and digs for answers. I tried initially to do just that. After a detailed two day psyche test, MRI and traveling to Portland Alzheimer’s Clinic and meeting with a neurologist, we decided no more testing. At that time it was possible MCI with possible Alzheimer’s with depression. We were both more depressed not getting something more concrete. The neurologist told us that time would tell. Well, it has. It’s too stressful for my DH to be tested again and I’m looking for concrete answers I really can’t get. It like “what’s the end game here?” Ultimately it’s a personal choice and I wish you the best.

SSHarkey

I have to agree with the others. Time will clarify what you’re dealing with. Symptoms alone can often shift the direction of the diagnosis. Right now you need to grab hold of the reality of the situation and begin all the legal processes, etc. There will be time later to do more testing if you should still choose to do so.

GothicGremlin

With my sister, she really wanted to know what was going on with her, plus she wanted to know how she got it, so she also wanted a genetic test. Her insurance covered all of it, so I made sure that she got all of the tests done. We never did find out how she got it (there didn't appear to be a genetic link), but did find out that she had FTD/Alzheimer's. She'd had an MRI, a PET scan, and a cat scan. It was by looking at the results from all of those tests together that allowed her doctors to make a diagnosis.

It was useful knowing that because some drugs work better for FTD than for other things, and some Alzheimer's drugs don't play nice with drugs for FTD.

But I agree with the others - it's a personal choice as well as deciding how well your wife can tolerate the tests at the stage where she is now. My sister was probably very early stage 4 when she had all of the tests done. If she had been stage 5-ish, I'm not sure what I would have done. I may have tried to talk her out of it.

harshedbuzz

@CindyBum

It's hard to see your worst fears confirmed on paper.

IME, there's not a whole lot of difference in the experience and symptoms between vascular and Alzheimer's, but Lewy Body and FTD can have different challenges that require different medications entirely.

HB

MrBurns

I understand completely. We had the Neuropsychologist's full diagnosis for my wife - "dementia, probable Alzheimer's type". Got meds started, along with everything else. A trip to the big city medical center's memory clinic (2 hours away) to see a Nurse Practitioner confirmed the diagnosis and regimen. But, they wanted us to come back to see a Neurologist. We didn't want to go, because we didn't see any point, but we did anyway. Another 4 hour round-trip this past Monday. The Neurologist is seeing some things in the MRI and other medical issues that could point to a different diagnosis. He's ordering a sleep study, an EEG, and a glucose PET scan. IF it is something else, the medications and treatment could change drastically.

I don't think any diagnosis is perfect, but if there's something out there we could/should be doing differently, it's important to know.

My best wishes to you. You're certainly right that this disease sucks.