Necessity of a diagnosis
When we went to the neurologist and they did a 20 minute test on him and said that he’s in the normal range. That upsets me when we feel like we gained nothing and yet I know what’s going on at home. And then I think what’s the purpose of getting a diagnosis when all they’re gonna do is throw meds at him that aren’t very affective anyway. The one neurologist just kinda blew us off and said well there’s really nothing we can do about it anyway. Why is the diagnosis so vital when we know what’s going on?
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I feel the same. My husband was feeling foggy off and on in his early 60s. At 72 we had him go through a series of tests at the Alzheimer’s clinic in Portland. The neurologist told us possible MCI with depression. The MRI showed minimal shrinking of the hippocampus. We were told “time would tell.” We were both depressed because we knew more was going on. He said he would never go through that again. Well fast forward nine years and here we are. It seems to be progressing faster at this point. He has a good GP that is aware of his issues and I will go to her for any medications he may need in the future. We live in a remote rural area with a small hospital and a limited amount of doctors. It’s 2 1/2 hours to the nearest medical facilities that offer more and the drive is not easy.
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I took my DW to the PCP 3 years ago. She was 52 and we both didn’t know what was going on. The PCP originally said it was brain fog due to Menopause, but I wasn’t going to accept that diagnosis. She referred her to a neurologist who did a brain scan but said everything seemed normal for her age. I didn’t accept that diagnosis either and asked for the next step and the neurologist referred her to a neuro psych doctor for testing. After many hours of taking tests, my DW was diagnosed with Aphasia. I then took this diagnosis and took it to her insurance and after fighting with them, they finally gave me a referral to Mayo Clinic which was out of network. Our out of pocket costs were $8,000 which we had to pay but finally got the diagnosis of EOAD. With finally getting a diagnosis, we were able to get SSDI and after the two year waiting period, her Medicare starts next month.
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Getting a diagnosis helps with getting proper medical treatment, file for medical insurance and hospice care.
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If they're not on Social Security a diagnosis is imperative to file for disability.
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The drugs that can be prescribed are not useless. There is no cure. The drugs can influence behavior and control some of the most serious behaviors. With my DW we found that seroquel, in small doses eliminated the fears and visions she greatly suffered from. It helped her sleep and be compliant when we were dealing with acting out. She lived for 7 years after diagnosis and seroquel worked to make those years of 24/7 caregiving comparatively doable for me. We were fortunate to have a neurologist that through her NP was available 7 days a week through email for modifications to her regimen. Rick
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as others have commented, you need a diagnosis if you need to file for Social Security Disability. I would make a list of his behaviors and send to the Neurologist. Don’t let your DH see the list. Did they do an MRI? Was there white matter disease? I would consider getting a second opinion from a different Neurologist. Is there a memory clinic near you? Some are affiliated with Medical Colleges. XYou can request the 4 hour Neuro Psychologist test which in my DH case showed visuospatial difficulties and they told me he should no longer drive. Knowing what I know now I would not have put him through that testing. I would ask for a referral to a Geriatric Psychiatrist who is best to manage medications to control behaviors in patients with dementia which you will probably need in the not too distant future. Also a diagnosis is helpful because certain medications are not indicated for certain forms of Dementia. Dementia is difficult to diagnose. Many doctors are not knowledgeable about it. The Neurologist was correct. There is no cure and it’s a progressive disease and nothing the doctors can do but manage behaviors that come in the various stages. I know it’s frustrating but keep asking questions until your questions are answered.
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Thank you all for your insight and suggestions. I’m thinking now that maybe his attitude about not being worthy and his sadness might be the tip of the iceberg for needing an antidepressant in the near future.
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My LH is76 and we have been retired for 13 years.
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I pressed and pressed to get a firm diagnosis from our neurologist. I have no problem firing a doctor that brushes us off as if we are worthless pieces of life! I don’t really understand the numbers 4/5 but my DO has had symptoms for about 3 years. Bloodwork showed 2 APO E4….. both his parents had the gene which throws you out of many trials. Finally got PET scan after battling with Medicare for months. It was the final confirmation we needed so now anyone in doubt can’t just say it’s old age. His neurologist has a visiting nurse once a week, paid by Medicare, to help with what’s going on! So for me it helped confirm and help me get more support for both of us! There are some trials but we choose not to do any. My DO is 86 and I’m 60. I’m trying to educate myself so I know when arguing is hopeless!
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oops, I’m 80🥹
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What is 20 years amongst friends 😊?
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Currently dealing with this myself. After 2 visits to the neurologist and 2 memory tests and a private meeting without my husband the best I could get was Dementia. He did rule out vascular based on the MRI and alcohol related dementia based on the blood test but I’ve yet to get anything definitive. I believe he has FTD based on symptoms. I haven’t completely given up on getting something definitive but, like others have said, different dementias respond differently to some meds. Not to mention that I’m having trouble wrapping my head around my husband’s rapid decline, whole host of bizarre symptoms and the medical establishment just blowing it off.
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There are causes for dementia that can be treated so please learn what the correct procedure is and insist that the steps are taken.
Additionally meds given are different for the kind of dementia present.
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I'm so sorry you've had this experience. It's really upsetting a doctor said that because a diagnosis is worth a lot. Not quite an equivalent comparison but what if I thought I had some type of cancer and the doctor said, "what does it matter? It's going to kill you anyways." I'm being hyperbolic, sure, but a diagnosis DOES matter.
Also it is literally a doctor's job to diagnosis someone and then offer treatment, as a diagnosis is the precursor to treatment. A diagnosis on what type of dementia a person has can offer a lot of clarity on what is happening and what your options are. For example, Lewey-Body Dementia is different than Alzheimer's. It can make a big difference in understanding a person's actions and behaviors (in a medical world where it feels like nothing they do makes sense) and it can help pave a path forward, even if it's a rocky path.
Saying that there's nothing they can do about it isn't true. They could prescribe medication, help you find resources like a support group, help your LO enter studies or experimental treatments if you were interested, etc. Can they stop it or cure it? No. Are they completely at a loss for actions they can take? Also no.
Any type of dementia is gutting. You and your family deserve to have a medical professional treat you with respect and compassion so you can figure out how to navigate this.
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I feel your frustration. They always talk about the importance of getting a diagnosis early and then the doctors don't even believe there is anything wrong in spite of what the family is saying.
Diagnosis is critical if your loved one has early onset and needs to get on disability or if you need to invoke power of attorney.
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I think we've all been there…the drs just don't seem to have a clue of what we're going through and pretty much just let you try to deal with it on your own. I had my annual exam with my PCP yesterday…also HWD's dr. She is very supportive and working with me to prescribe the right meds, figures out what to say to get him to take them, etc. He goes to the VA by himself and has been able to showtime so successfully that his VA Dr doesn't have a clue about his alz diagnosis. I shared this with my PCP and she immediately sent a msg and copy of the neurophys diagnosis to the VA dr. It is helpful to have at least one dr on your side and I hope you can find one…this is a terribly lonely disease…so thankful for this site.
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I'm with blacksparky on going to a neuropyschologist. They were much more helpful on testing and diagnosing my DW. My neurologist did the minimal test, which I suppose gives a baseline, but not enough. The neurologist also did prescribe Gabapentin, but nothing else. My PCP has been helpful with prescribing other basic meds (antidepressant, statins) and I also have a geriatric psych for medications for bigger brain issues. That's helpful anti-anxiety medications so far that work for someone with dementia, but could also be anti-psychotic if agitation or other troubling behavior appears more forcefully.
I will add that I found a diagnosis mostly helpful to my own mental health; it kicked me out of both denial and the awful stage of not really knowing. I found that limbo land really hard to mentally and emotionally navigate. There was relief in knowing what I was seeing was real, as sad as that reality is.
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Your last paragraph really resonates with me. I hate not having a definitive diagnosis especially given my husband’s rapid decline. The geriatric psych NP believes he has bvFTD and that’s where I have landed as well but I wish I knew for sure. The neurologist told me I would only know for sure if I did an autopsy. I won’t do that when the time comes bec what if it turned out to be something that could have been treated. I would have a hard time dealing with that guilt.
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I find many people don't see the need for a diagnosis, especially those in the medical profession. But, it would be helpful for me, the caregiver to have a name for this. There's something about having something concrete in mind that would help me mentally and emotionally. I don't care if that makes no sense to someone else, it's something I need. Everyone says "take care of yourself ". Well, this is part of that self care in my case. We're all different.
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My husband had a prescription that cost $500 a month before his diagnosis. After his diagnosis it is $440 for a 90 day supply because his doctor got approval from the insurance company because the drug won’t make his dementia worse but the cheaper alternative will. Also I was able to get a handicap hanger for the car. It is very handy when I bring him somewhere in the winter. He walks slowly and is unsteady. No the drugs he takes for Alzheimer’s don’t seem to do anything except cause constipation and there is no cure for his condition. Alzheimer’s is an incurable terminal disease.
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My moms pcp did a quick test that showed no problems. I insisted on a neurologist. After hours of testing she was diagnosed with dementia and we were advised that she should not drive and should not live alone. I wouldn’t put much stock in the short test. If you look in groups on this site then new caregivers you will find a lot of great information. The staging tool is very helpful. I would also suggest understanding the dementia experience. It took me too long to get mom diagnosed because I really saw dementia as being about memory problems. I agree with others that medication will not cure dementia, but you will need a doctor willing to prescribe medication to treat symptoms (pcp or neurologist).
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My DH was told by neurologist that he has Alzheimer’s 8 months ago. He worked a lot and after retiring I noticed he was off a little. When he went for yearly checkup at GP he mentioned it to them and was referred to neurologist. They did a memory test by asking a series of questions and he missed a few. Did a test that showed he has 2 APOE 4 copies. I read only 3-5% of people have that. Also did some new blood test that showed he was positive for Alzheimer’s . Neurologist said that blood test shows results as accurate as a spinal tap would. He had a MRI and found a mass on brain stem that can’t be biopsied due to location,, in a very sensitive area they say, but also say it has nothing to do with the Alzheimer’s . He had another MRI 3 months later to see if it’s grown any which it didn’t. They are now doing MRI IN 6 mon to watch it isn’t growing. They put my husband on donepizol but doesn’t seem to be doing anything . He not a candidate for clinical trials due to 2 copies of APOE4. He is in denial and I guess I don’t fully believe it because he still drives and gets along pretty well just can’t remember, or figure some things out. His sister died of EOAD @57. I guess I’m wondering with the blood test, and 2 copies of APOE4.,, is that enough for a diagnosis? Neurologist said An MRI won’t show brain shrinkage?
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Like others have said, an actual diagnosis would help w the unknowing, uncertainty, anger, helplessness, fear, and a multitude of other unsettling emotions I feel.
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@conrey - It sounds like this neurologist is pretty certain in his diagnosis. If you’re not, all you can do is request additional testing (which they usually don’t like) or get a second opinion. In the meantime though, if your husband has a documented Alz diagnosis on his medical record, he is probably no longer insurable to drive. If he gets into an accident, even if it’s not his fault, you could be sued and lose everything. You may want to look into this asap, so sorry…
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@CampCarol My under 70 DH's official diagnosis is MCI. He has had a battery of tests (CSF, MRIs, blood, psych) that indicate that this dignosis could change over time. He is APOE-e4 homozygote, so most early therapies are excluded. He drives very well. The neurology clinic that he sees insisted that he he have a driving test even though he has had no accidents or tickets. It took a while, but he finally agreed to take the simuator test. He easily passed the test. Given that his official diagnosis is MCI, and their official tests show no imparement, he shouldn't have any auto insurance issues, should he?
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Honestly, I don’t know. DH went straight to the Alzheimer’s diagnosis, no prior MCI. His doctor is the one who told us he’s no longer insurable, and I’ve read other comments saying the same on this site. I have no idea where the line is drawn, or if there’s even a line between MCI and further impairment when it comes to driving. Maybe others here are more knowledgeable; I’m so sorry I can’t help more.
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my experience with Neurolgist is mainly to see if our LO is eligible for trails. We couldn’t get a positive diagnosis even after the blood tests that showed two APOE4. I fought hard for a PET scan, MRI s don’t do much for the Alzheimer’s diagnosis. We now have only our family doctor taking care of him and his meds. I am going to ask for agitation meds next visit as he can become very angry when things aren’t working. Oh well, the light at the end of this tunnel is a train! Blessings and strength to all!
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Having a diagnosis allowed me to use the DPOA for selling and buying investment property without having to get him involved.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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