Neuro visit update

ghphotog

Everything went very smoothly all the way into the exam room.
I handed the nurse a note for the Dr to be discreet and listed all of the symptoms starting from about 5 years ago.
I guess he was about as discreet as he could be while trying to do an exam. He had my note with him but he was pretty much "matter of fact" and right away started asking my wife some memory questions. When she would turn  to me for help with the answer he would almost sternly let her know "he" was talking to her.
Well she started to feel somewhat interrogated and shut down.
When he ask me to elaborate on some things I wrote down I had no choice but to be honest with him, in front of my DW.  That set my wife off and she became very emotional, crying, asking me why I would say such things bout her that she hated me.

I asked the Dr if he could put a number on where he thought she was, all he said was "severe".
He ordered an MRI and a follow up in 4mo.

She cried and sobbed, telling me she hated me, all the way from the dr's office to the car.
She started feeling better when I promised to take her and my mom to get a burger, she loves burgers, and myself a couple of beers. I needed them.
Half hour later, she pretty much forgot all about it but I know the next time she will remember the experience and feelings she had even though she probably won't remember the visit.

Ed1937

I'm glad she had the visit, but I'm sorry it upset her so much. If you didn't see my reply to you about having an MRI for her, check it out. It could be the difference between having it done successfully, and failure to have it done. Please keep us updated on this.

ghphotog

Hi Ed thank you! Yes I saw your post regarding the MRI. 
The Neuro asked if she was ok with an MRI and I said the last time she had one, 15 years ago, she couldn't do it. She had to be sedated and I still don't remember if it was successful.
When I told the doc that No she will probably not be able to. She was already upset with me and said that YES! should could. Mostly out of spite but when it comes time for it, I know more drama will ensue.

Just Bill

That's good ghphotog you got the ball rolling. Now that you have a neurologist in your corner get your wife on meds. For her quality of life and your ability to manage her. Attack the symptoms. Depressed ? Antidepressant. Anxiety ? Antianxiety. Hallucinations ? Antipsychotics. Once you and her doctor have her med cocktail figured out her brain is still a dynamic moving target. You will have to make adjustments every 3 to 6 months. If you are a 24/7 caregiver survivor, meds are a game changer. Keep on keeping on. Good luck.

Vitruvius

I posted to your previous thread asking about your upcoming visit. I had forgotten however that your DW would probably turn to you and ask for help answering questions. Mine did as well. 

For others benefit here's how I dealt with that. When DW would turn to me for help answering I just said I didn't know or I didn't remember and then asked what she thought or remembered. This generally made it so the neurologist didn't need to point out to her that the question was for her. But not always, sometimes she pressed me for help. In that case there was little I could do and the neurologist usually deduced that they were not going to get an answer and moved on.

Ed1937

Vitruvius wrote:

 Mine did as well. 

As did mine.

M1

ghphotog, speaking with my doctors hat on I'm not all that impressed with this guy by your description. But you're not alone, many people here describe that their LO's feel humiliated when evaluated. Maybe some of it is inevitable, but I m not so sure. Humiliation is an extremely powerful emotion and yes, she's likely to remember it.  Plus,  four months is a very long time to wait for follow-up, especially if you need or want medication initiated. Why so long? it takes maybe a week to get blood and mri results.  Like I said, not impressed. Not to add to your troubles.

M1

ghphotog, speaking with my doctors hat on I'm not all that impressed with this guy by your description. But you're not alone, many people here describe that their LO's feel humiliated when evaluated. Maybe some of it is inevitable, but I m not so sure. Humiliation is an extremely powerful emotion and yes, she's likely to remember it.  Plus,  four months is a very long time to wait for follow-up, especially if you need or want medication initiated. Why so long? it takes maybe a week to get blood and mri results.  Like I said, not impressed. Not to add to your troubles.

Joe C.

I glad for you she she basically forgot about the appointment quickly. The first time I took DW to a neurologist in the early stages of the disease she literally did not speak to me for a month. Similarly the Doctor did not have much tack for dealing with DW.

ghphotog

PS, the doc prescribed Memantine. Has anyone had experience with that drug?

Just Bill

Yes my wife takes it. It reduces the hallucinations and speeds up her thought process. She takes Zyprexa and Memantine in the morning and Seroquel and Memantine at night. She also takes Effexor in the morning for depression. Before the Zyprexa and Memantine she was delusioning pretty bad and having psychotic episodes. After the Zyprexa and Memantine it has been bliss for about 3 months. Her delusions and psychotic episodes slowly started coming back so her doctor doubled her doses and she is back to bliss now. Her disease is still progressing but much more peacefully now. I am sure in the next 3 to 6 months her symptoms will come back and we will make another adjustment.

ImMaggieMae

.

ImMaggieMae

Just Bill wrote:

That's good ghphotog you got the ball rolling. Now that you have a neurologist in your corner get your wife on meds. For her quality of life and your ability to manage her. Attack the symptoms. Depressed ? Antidepressant. Anxiety ? Antianxiety. Hallucinations ? Antipsychotics. Once you and her doctor have her med cocktail figured out her brain is still a dynamic moving target. You will have to make adjustments every 3 to 6 months. If you are a 24/7 caregiver survivor, meds are a game changer. Keep on keeping on. Good luck.

I agree completely.

ImMaggieMae

In reply to your other question, husband had been taking 5mg of Memantine twice per day for a couple of years and I couldn’t tell if it was doing anything or not. Then in mid June his neurologist added 5mg per day and I saw a very big change for the better. 5mg more per day for a total of 20mg per day improved things a little more. His empathy which had disappeared over a year ago returned. He started eating more foods and gained back 15 lost pounds +, has been able to spell long words like television, bookcase, charisma where before he sometimes had trouble with 4 letter words. The spelling ability does change back when he is having a UTI or other medical issue, but the empathy remains. With the last dose increase he is able to dress himself again where he couldn’t before. The urinary incontinence disappeared during the day for about a month but is now back again at least half the time. 

It did seem to make him more drowsy in the mornings where he wasn’t before. Cutting back on the Risperidone the night before helped a little but he still nods off on the couch often in the morning. 

Belldream

My DH is on Memantine and Donepezil. I'm so sorry the visit didn't go very smoothly. I also forgot about looking to us for help or input. 

I will also say we are on our 5th neurologist. We finally found a really good one. That can sometimes be a challenge. 

Kevcoy

I've found when you ask a neurologist about what state a person is in it's not the 1-6 like we have heard so much about.  For them it's usually a three tier system, mild, moderate or severe.