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What to expect from my neurologist
Posted: Wednesday, March 13, 2019 11:43 AM
Joined: 10/14/2018
Posts: 22

My DH has had two visits with his neurologist in which he was tested orally and then given a battery of tests -- MRI, EEG, EMG, blood tests,etc.  On the second visit they discussed his neuropoty and informed us that he might have NPH (fluid on the brain) so he went through another test which indicated that he did not have NPH.  However, they have given us almost nothing concerning his dementia.  We were told they would talk about that at the next meeting now that they know there isn't a physical cause.  My question is what can we expect the doctor to tell us.  Should we know what kind of dementia; what is the stage he is in; what should they tell me, the caregiver, to help me; should I get to see/get a copy of the brain scan.  So far I feel like we am getting little information and questions that I send through the patient portal are mostly ignored. My DH still thinks he is fine, but he does rely on me for almost everything which seems to me should indicate to him that something is wrong.  Thanks for any help.
Posted: Wednesday, March 13, 2019 12:40 PM
Joined: 10/25/2018
Posts: 239

Honestly, the neurologist really isn’t going to be all that helpful. They'll likely tell you what kind of dementia it is (though with Alzheimer's, they cannot be sure until after a postmortem). They can give you some idea as to the current stage, but you spend more time with him, you'll know better. They will more than likely prescribe medication, which may or may not help. You can ask for copies of the brain scan. They gave me a DVD right after my dad's MRI. I have it, looked at it once. I have no idea what I was seeing, but from what the neurologist told me, it wasn't abnormal.

Ask them they score of the MMSE oral test they did. My dad was about a 18 when he was diagnosed, a 12 the next year, and he was a 2 when I moved him into memory care about six months after that.

I would also ask for a referral to a geriatric psychiatrist. As my dad declined, so did his pleasant personality. A geriatric psychiatrist is going to be better able to assess what medications are helpful for aggression and depression. You may not need this doctor now, but it would be good to have this person in your contact list.

The neurologist is not going to assist you with getting help, nor will they prognosticate. They may have a social worker on staff in the office, and that person will be able to help you find local assistance, like support groups and companies that provide home aides. 

The one thing the neurologist will provide you with, when the time comes (which is going to be up to you, they are not likely going to offer it), is a letter stating your husband is no longer able to conduct his own affairs. Hopefully you have power of attorney all set, and this letter will allow that person to assume that role.

Rescue mom
Posted: Wednesday, March 13, 2019 1:21 PM
Joined: 10/12/2018
Posts: 548

I agree with what pigeon said. The neurologist was a big slap in the face for me, on how little help they actually provide. 

Ours just referred us on; he  did have those trained social workers on staff, who gave us brochures about support organizations and home health care. And we got copies of the scans, which a nurse explained and even I could see huge diff in DH brain and normal brain.

But as for what stage? You will make that judgement.  There’s so much that nobody knows, what they’ll tell you is every brain is different, so different people will show different problems at different times.

You’ll learn more practical help in this forum than we got from any of the docs.

Posted: Wednesday, March 13, 2019 1:26 PM
Joined: 3/9/2019
Posts: 1

What is MMSE?  We recently received a report from the neuropsych test and I'm not sure what all the numbers mean?
Posted: Wednesday, March 13, 2019 1:32 PM
Joined: 10/25/2018
Posts: 239

The Wikipedia page has a good explanation of the MMSE:–Mental_State_Examination

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