What are questions we should ask the neurologist?

@lynnrackliff When I looked at your profile I saw that you joined Mayo Clinic Connect two months ago. It looks like this is the first time you have posted so I offer you welcome. I hope you will find that we are supportive and can offer suggestions for your questions.

I worked at Memory Diagnostic Center for several years. This was a multidisciplinary team of neurologist, psychologist, social worker. advanced practice nurse specializing in geriatrics, and a volunteer from the local Alzheimer's Association.

I'd like share that a diagnosis of a cognitive disorder due to dementia is a process. There are other treatable conditions that can look like Alzheimer's disease and other dementias but are in fact due to medications, anxiety or depression.

From what you have written I suggest that you write your observations of your husband with approximate dates when you first noticed these changes. This will be helpful information for the neurologist as they will want to know how long ago your husband first started to experience what you've observed.

I suggest, too, that you ask the neurologist for a referral for cognitive testing. The cognitive testing performed by allied health professionals or a psychologist go beyond a quick screening test called the Mini-Mental Exam that physicians often perform in the office. The Mini Mental is a screening test that takes 10 minutes or less.

If your husband's neurologist does not order additional testing such as blood tests and brain imaging then you should ask about this. This is part of the entire evaluation to rule in or rule out explanations for your husband's changes.

When you ask about cognitive testing, you could also ask about a referral to a comprehensive memory diagnostic center. Depending on where you are located I have included links to some memory diagnostic centers that I am familiar with.

University of Wisconsin Memory Clinic Network:

-- https://wai.wisc.edu/memory-clinic-network-list/

Mayo Clinic--Diagnosis and Treatment of Dementia:

-- https://www.mayoclinic.org/diseases-conditions/dementia/diagnosis-treatment/drc-20352019

Johns Hopkins University - The Memory Disorders Center

-- https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/memory-disorders

I may be able to find other options for you. May I ask where you are located?

Hello. I would write the list of things you just described. If they have a Movement Disorder Physician..get a referral early on. They have more training than the Neurologist who sees lots of neurological conditions. Get in touch with the Parkinsons Association. org and check for any programs that include Parkinsons. Stiffness and freezing are a given. You are going to see new things that are not usual for your loved one. I would keep a diary. Always , always ask questions.I hope that helps some. I have 3 people in my family with Parkinsons. Hugs to you and your family.

There's a small gym near me where the owner specializes in working with Parkinson's patients. He knows what he's doing and he helps his clients. It would be great if you could find someone like that. This fellow, a former athlete who specializes in working with the elderly and Parkinson's, believes exercise is more helpful than the drugs that have awful side effects. I'd do a lot of investigating before I went the drug route. I know a man in my city, a former colleague who was an economics professor, who has severe Parkinson's. He became so aggressive three rehab. sites kicked him out. When his wife put him in a facility because she could no longer deal with him, he accused her of abandoning him and complained to all their friends. It's a terrible situation and I don't mean to distress you further, but you will need lots of help. Don't be shy about asking for it and don't let your husband prevent you from doing what you know is right. Best wishes for this difficult journey.

Here's what I don't understand: if there's no treatment for Alzheimer's, why the need for excessive diagnostics? It seems to me that, once you have a diagnosis, what you need is lots of support. Perhaps the money that goes for expensive and distressing testing could be used for actual support either in the home or in a memory care facility.

@pamela78 The need for testing and imaging is to make an accurate diagnosis. There are other conditions and diseases that look like Alzheimer's disease but without adequate time with the patient and more testing it's not possible to know that. I wrote in my first post that some of the symptoms that were described by @lynnrackliff could be something other than Alzheimer's disease. Alzheimer's disease and other dementias are not straightforward or easy diagnoses to make in a doctor's office in one visit. She wrote that her husband had a stroke 5 years ago. What if the current symptoms are related to more strokes? Then the additional testing and imaging can sort that out. Then the doctor can decide what medications or treatments can be offered to prevent future strokes. What if some symptoms are depression? Then there is treatment for that.

I saw all of the above in my years working as a mental health professional in a Memory Diagnostic Center.

Does this help to explain why I made these suggestions?

@lynnrackliff
I feel for you and can empathize. Has your husband ever been diagnosed with a psychological assessment before his decline for ADHD, Autism, etc. His behavior sounds a bit like my ex husband who is 60. His mother (my MIL) had early onset Alzheimer’s and he is also starting to show signs more in the last year (our son is 15). Very bizarre behaviors and angry outbursts, agitation, paranoia, accusing me of things, breaks things because he doesn’t control his hands well, etc.

Did your husband ever had a fall or injury to his head/neck? Car accident?

I have been to neurologists and have had a lot of testing. Your husband (if he will cooperate), needs an update mRI of brain and possibly cervical spine to see if there is any compression of spinal cord/nerve roots/nerves that may contribute to his lack of fine motor skills. Cervical spine compression can cause symptoms in head/neck/arms/hands and bladder/bowel plus walking/balance. Your husband may benefit from EMG/nerve conduction studies to check communications of brain to his upper/lower limbs/muscles. There is also a SSEP test and small fiber neuropathy test using a skin punch biopsy. The tests will depend on all of his current symptoms. The first appointment will be long to make sure to cover all symptoms, clinical exam/evaluation, etc. and then determine what tests/bloodwork would be appropriate.

Does your husband have any issues with swallowing or speaking?

Hi, I found the best way to be prepared for the neurologist was to come with a summary of the notes I'd been taking for a year, that detailed any unusual behavior in my husband. Since you only see the Doc for a short time, they may not witness what you've been seeing. You can be the eyes and ears. Good luck.

Thank you for your help. We are located near Tulsa, OK.

He has had surgery on his neck because his neck was compressing his spinal cord and causing his arms and hands to go numb and impeding his walking, causing him to far 3-4 times a day. He still falls regularly (an average of one time a day). He has had some recent MRIs of his brain which is how they determined he had a stroke. I am interested in the EMG/nerve conduction studies to check communications of brain to his upper/lower limbs/muscles you mentioned. Thank you for the information. Very helpful!