Lewy body dementia diagnosis?



Good morning all, after 6 months of getting nowhere with my (age 89) FIL's primary care doctor of "he's just getting old, is all" I think I've cracked the code on my FIL's illness. He fits, unfortunately, into all the symptoms of LBD except hallucinations. We have a new doctor group (thank heavens!!) that specializes in geriatrics. They said that an official diagnosis would cost thousands and likely exacerbate my father's dementiaa PT scan, a visit with a neurologist, mental testing, etc. The family agrees, but Mom would like a diagnosis. She thinks that he has something that is curable and that we're just missing something. We have no interest in any of the RXs that are on the market. We just want to know what we're dealing with and its progression.   
Can a diagnosis be agreed upon without all of the expensive and extensive testingmaybe just based on observations and notes and an in-house neuro exam? What was your experience with your LO?
I think many of us have to depend more on observation and self-study than on diagnoses, given the expense of testing and the ugly fact that nothing short of an autopsy can give certainty. Here’s how we are coping with that uncertainty. Before my Mom came to live with us, she had fallen at night going toward the bathroom in her apartment. It was 3 days before anyone found her, and there was severe dehydration and some brain damage due to oxygen starvation. She recovered some functioning in rehab, but we had also noticed before the fall that there were more and more signs of cognitive decline. We were warned by a friend who is a geriatric psychologist to not accept the overall “Alzheimer’s” diagnosis which was bound to occur, but to be aware that there were dozens of dementias, some of which needed very different approaches from what is advised for Alzheimer’s. After she got out of rehab she went through a very bad AL situation and into a very good one. She had a GP who made housecalls but was not that knowledgeable about dementia. She had begun describing what could only be hallucinations and agitation, so her doctor put her on an anti-psychotic, an anti-anxiety and a depression medication. Wow! What a mess! Mom had rarely even taken an aspirin before that so maybe her body was super-responsive to the invaders. Anyway, it did more damage than good, and once we eliminated the meds, she slept all the time. We decided to move her in with us and her new doctor prescribed Namenda. We started with 10 mg, which was too much and increased her agitation. We cut back to 5 mg. once a day at nighttime and it was like a miracle occurred! Now don’t get me wrong, there’s still dementia and it’s still advancing. But my point is that sometimes when you don’t have a diagnosis, it’s useful to read up on the various kinds of dementias, do a checklist of the symptoms to determine which is the best match to the behaviors you are seeing, then become knowledgeable about the various RX’s physicians are likely to try, and get very good at monitoring the response to each and asking about/suggesting others you’ve read about. (I know, you thought that was what doctors did — me, too! Wrong!). I found that as long as I behaved as a fairly well-informed and non-judgmental problem-solving partner (and not as an over-protective, aggressive, critical, and sometimes hysterical relative), I got the same treatment back from the doctors. (Of course, if I did not get that, I did not hesitate to find a doctor with an attitude that worked better for us.). Over time, the troubles with balance, the hallucinations that occur immediately if she misses a dose of Namenda, the depth perception, the amount of activity and conversation that goes on while she’s “sleeping”, the extreme variability from “almost normal” to “almost unable to function”, etc. convinced me it is LBD. It’s not a formal diagnosis because we can’t afford all that testing either. But it’s enough for me to protect her from getting inappropriate medications. While there may come a time to move her to a memory care unit, I will also be able to be proactive with staff about what works with her LBD that is probably vastly different from what works with some of their ALZ patients. Summary: observe, study, and use your best and most loving judgment, with or without a diagnosis. Respect but don’t worship the doctors who are trying to help. And trust your gut. You spend more time with your LO than anyone else and your observations are valuable.
A.  You wouldn’t go to a pediatrician if you had cancer. You wouldn’t go to a kidney specialist if you had heart trouble. All doctors are not alike. Sometimes we have to go to the right specialist to get the help we need. In your case, you need both a psychiatrist and a therapist who work together to get the right care.


The treatment of choice for your problems is a combination of medication and talk [therapy](https://psychcentral.com/psychotherapy/). [OCD](https://psychcentral.com/disorders/ocd/) and [anxiety](https://psychcentral.com/disorders/anxiety/) disorders can be treated and managed successfully. Generally, patients see their therapist weekly and, after an initial period of weekly visits to get the medication right, they see their psychiatrist every few months. When the two professionals are working in the same practice, they are able to confer with each other easily and work together to give you good care.



I understand that you have been afraid to see a mental health professional because of your grandfather’s experience. But treatments have changed considerably since your grandfather’s time. From the little you shared, I also suspect he had a much different problem.


To find a specialist, ask your primary care doctor for a referral to a practice. You can also go to the “Therapist Locator” on the homepage of PsychCentral.


Please don’t hesitate to make an appointment for an initial session. The clinician will listen to your story and will make suggestions. (Take your letter with you if you want to jump start the conversation.) You are under no obligation to follow through with the treatment plan that is proposed. But I hope you do. You’ve suffered far too long.


I wish you well.  

Dr. Marie


I Have Struggled for Years you have an older dog. arthritis was a reasonable first diagnosis. your vet did the right thing by going with the most likely diagnosis and conservative treatment. 

since the arthritis meds have not helped, that means there may be something else going on. 

you need to make another appointment with your vet and take your dog back. this time, your vet may want to do more expensive testing such as blood work or x rays. 

since dogs can't talk and tell us what is going on with them, sometimes a condition has to be diagnosed by process of elimination. a good vet will start with the most common conditions and be mindful of your budget. it sounds like you have a good vet. you've given the pain meds time to work and are seeing no improvement. that means, you need to go back and be prepared to pay for more expensive testing. 

a couple of weeks ago i took my 12.5 year old boy to the vet because he was favoring his back leg. i figured it was arthritis and best to check it out. the vet agreed and we put him on anti-inflammatory medication. after 4 days on the meds, he was not better and was even worse, feeling lethargic. i took him back and the vet suggested blood work. based on the blood work at that visit, the vet recommended an abdominal x-ray. when that was done, it was determined he had end stage cancer and his body was failing. i don't tell you this to scare you. but merely to illustrate how a good vet works. the first vet visit cost me $24 office visit. the second $245. had it just been arthritis, there was no need to incur the blood work and xray when an office visit and a course of meds would have solved the problem. when that did not work, we knew we needed to look deeper and do additional testing. i was officially diagnosed when i was 11/12 but had been experiencing pain and flares since i was quite young about 5/6. doctors initially wrote it off as "growing pains" or symptoms from high/low blood sugars (diagnosed with type 1 diabetes when i was 9) but went for more extensive testing out of town at a children's hospital where it was later discovered i have juvenile onset inflammatory arthritis (later ra) and a condition where the ligament's/muscles on the insides of my knees are very weak (can't think of the name right now.) and you are quite right, this journey we all deal with is a long and tiring one, but remembering to stay positive, do what you can when you can, to rest when you need to, and to have support whether through family/friends or sites like this we can all come out saying we got this! xo Hello Dede, Thank you for the question.



Has your father seen a doctor after this accident? If your father has an accident and falls / hits him, this impact can have an impact on the affected body. The impact also depends on the strength of the impact experienced. This impact can affect bones, muscles, tendons (connective tissue that connects muscles to bones), ligaments (connective tissue that connects two bones), blood vessels, nerves, and skin. Symptoms that can result from this impact are injuries, bruises, pain in the area, swelling, or difficulty moving the limbs. If until now your father's left leg cannot be used for walking, you should suggest that your father immediately see a doctor. The doctor will examine your father and will usually suggest further tests such as x-rays. X-rays can tell if the complaint your father is experiencing is caused by a hip or thigh fracture; because if you experience a fracture, then treatment by an orthopedic specialist needs to be done.



If no fractures are found, the doctor will usually suggest consulting a medical rehabilitation specialist to arrange a physical therapy program that your father can do to regain strength so that it can return to normal function.



Hope this information is useful.



Dr. Aloisia that is what the data suggests. "the tamsulosin cohort had a higher incident risk of dementia compared with both the no medication group and the alternative medication group." this was from a study of medicare data of over 250,000 men who were 65 or older. ref: https://www.practiceupdate.com/content/dementia-risk-associated-with-tamsulosin-in-benign-prostatic-hyperplasia/71451 see more... better yet , find out if there are any epileptologists ( neurologist who specialize w/ people who have epilepsy ) in your area. the next best thing would be, to call the epilepsy foundation. they maybe able to help you find a good dr.. and not a pa. she might be depressed. judicious low dose treatment might help her.... and you. see a geriatrician. changes are certainly possible, but if you feel a hard lump, or if you are uncertain of the significance of what you are feeling, you should see your doctor for an evaluation to make sure. see more... would advise an exam by your doctor to be sure. see more... A.Insomnia is no joke. Not getting sufficient [sleep](https://psychcentral.com/disorders/sleep/) at any age, but especially as a teen, is serious business. Sleep disorders can cause [depression](https://psychcentral.com/disorders/depression/), [anxiety](https://psychcentral.com/disorders/anxiety/), diabetes, high blood pressure and heart disease. According to a poll done in 2005 by Sleep in America, people who were diagnosed with depression or anxiety were more likely to sleep less than six hours at night. A study done in 2007 showed that people with insomnia are 5 times as likely to be depressed as those who got sufficient sleep. At your age “sufficient” means 8 – 9 hours a night.

I urge you to go back to your medical doctor for more tests. I’m alarmed that you were drinking enough but not staying hydrated. There’s more to that than sleep deprivation. I’m also alarmed that apparently you were given a “diagnosis” but not then given a treatment plan to regulate your sleep.

If your primary care physician isn’t able to help you, get a referral to a sleep medicine clinic for a sleep study. Such clinics do a thorough evaluation of how much sleep a person gets and how often and for how long the person is awake. You may be sent home with a monitor to wear. More likely, you will be asked to spend the night at the clinic where they will monitor you throughout the night. You will sleep in a comfortable room in a comfortable bed. You can usually even bring your own pajamas.

Don’t be scared. A sleep study isn’t painful. Doctors or technicians will monitor you while you sleep. Little disks called electrodes will be temporarily glued to your head and attached to an EEG (*electroencephalogram*) machine. This will monitor the electrical impulses in your brain while you sleep and will show the technician how you are moving through the stages of sleep. It will measure possible interruptions in the pattern of your sleep. The technicians will also measure things such as eye movements, oxygen levels in your blood, heart and breathing rates, who much you snore, and how your body moves as you sleep.

The data from your sleep study will be evaluated by your doctor. You will then have a follow up appointment with your doctor to discuss the results and what may need to be done to help you have more regular and restorative sleep.

Please share this response with your parents. I don’t think you are lying or faking. I think you have an untreated medical condition that left untreated will only make things worse.

I wish you well.

Dr. Marie

 

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