Alzheimers care and treatments: Consult with Mayo Clinic?

@jlharsh
Thank you so much for sending this . Right now I am trying to hold myself together. I think since I know that this is indeed the problem, everything has gotten worse , if that makes any sense.
I am in a panic because I don't have a doctor. The doctor I saw for less that 30 minutes who ordered the blood tests was abrupt, cold and indifferent and said if I wanted she would prescribe the Donepezil. So the first thing I must do is find another doctor. My pcp is at UCLA so I will try to get an appointment there. The scary thing is I have no family near at all who can help me. So that is a big worry. There seems to be a dramatic worsening of symptoms the last few days ..... forgetting things, even typing an email last night I made countless errors because my fingers kept getting on the wrong keys- that's something that has just begun. I am making countless errors and have to back up and retype. I am wondering if my panic is doing this or what is going on. Very frightening. I think I will have to get some anxiety med if this continues. I am in a very bad place right now .

@bexg I am able to message my husbands doctors because I have power of attorney and his medical.
Maybe look into that if you don’t have it?

My husband was diagnosed through a brain mri. What is a MMSE test and I wonder why he needs it to qualify for the medicine? My husband is on Aricept, he was given 5mg for 30 days and seemed ok so it was increased to 10mg 6 days later he went back to 5mg because of hallucinations which he only gets when he is sleeping but he wakes up all the time. I am calling the doctor tomorrow regarding this he gets really confused when he wakes up like he is still in his dream.

@jeanadair123 We were told by our Neurologist, and I have also read in multiple articles that AD/Dementia cannot be diagnosed with a simple MRI. There are only two tests that can accurately determine that; a PET scan and a specific blood test.

An MMSE test is a cognitive test to gauge where a person is at with their cognition. You can do a search online to get copying of various tests.

For my wife to qualify for insurance approval for Leqembi, she needed to go through multiple steps. Cognitive tests, MRI, and lastly a PET scan. That assures the insurance company that due diligence has been performed before approving the medication.

@jlharsh
I am a bit confused. I replied to this post but it is not displayed here so not sure why.
I'll try to find it. There are a few groups that are connected to dementia I've seen on Mayo Clinic so I must have been in another one?
Mostly I am feeling frightened right now.

@jlharsh
Hi

Did you receive my reply ? I sent it last night.

@jlharsh and @alju, Janell, thank you for sharing the discussion link with @alju. I am happy to answer any questions you have that I have knowledge of. As Janell said, this board is for anyone anywhere that needs information or just needs to vent, cry, or scream.

My wife is on her 18 or 19 Leqembi infusion and is tolerating it well. She is also on Donepezil and Memantine. I have pulled back on the Memantine to just one dose a day instead of two. Just trying to minimize the chemicals that go into her body cause who knows what it may be doing that we don't yet know about. We also recently started going to Speech therapy and it has been very helpful. She doesn't have any issues with talking but it provides assistance with day-to-day activities in addition to helping her with a strategy to find words among other things. The therapist must have extensive experience with AD/Dementia, otherwise they will not know what the patient needs.

@japlok Thank you for the information, sometimes I get so exhausted from doing research and would like to believe what the docs tell us. He is having a pet scan on Thursday for his cancer they said it covers from his head to his mid thigh so hopefully that will show it? His neurologist did show us on the mri the white areas of concern.

@jeanadair123 Just so you know you are not alone in you and your LO's journey, my wife's neurologist is highly regarded but he didn't even take the time to show us any scans that were done. Our second opinion from the Mayo Clinic was the first we got to see the scans. We don't deal with him a lot and because he is working to find a cure, we are sticking with him.

Keep fighting because there is a light at the end of the tunnel. Your determination will determine how bright the light is and how long it stays on...no pressure. That is how I look at things.

I am here to help in any way I can so don't hesitate to call on me...

I am so sorry you are frightened right now @alju. It is scary not understanding what is happening and not feeling like you know what to do. It makes sense that you are totally overwhelmed. You really are in a good place here.

Thank you for sharing more about what you are feeling. You may not see it clearly right now but I read some potential good possibilities for you.
- You have connected with @japlok who has walked your path with his wife. Others may join the conversation as you hang here.
- You mention having a PCP who can help you. If it were me, I would see him/her as soon as possible to help navigate and also connect me with some counseling/therapy to help process and manage my stress.
- While not physically close to you, you have family who may be able to help. I live hours away from my family currently. It has been sad and confusing at times. I can also say this is helping me figure out what I need and how they can help me from a distance. My husband just participated in my recent appointment via phone. If it were me I would let my family know what is happening.

Did you decide to contact your primary care provider?