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Alzheimers care and treatments: Consult with Mayo Clinic?

Posted by japlok @japlok, May 12, 2025

My wife was just diagnosed with AD and is currently on Donepezil. She will be taking a MMSE test in a couple of weeks to see if she qualifies for Leqembi or Kisunla. Does anyone recommend trying to get a consultation with a doctor at the Mayo in MN or stick with my current doctor? I'm looking for the best 'team' to help my wife and don't want to miss any opportunity if one is there. I have done nothing but read about the disease and tried to find any information on advancements to cure AD or slow it down significantly but haven't found anything that is promising. I read about using ultrasound to allow for the medication to attack the plaque quicker and also something called Perispinal Etanercept where an FDA approved drug for arthritis is used for AD treatment. I just need help with our path forward.

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dlssell | @dlssell | May 27 8:22am
In reply to @alju "@jlharsh Thank you so much for sending this . Right now I am trying to hold..." + (show)
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@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 .

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@alju
My husband who suffers AD dementia, and I live in NY, and found excellent behavioral care neurology physician at Mayo in MN. Following testing, we are now communicating via tele appointments which work out very well. Good luck to you…

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randyreg | @randyreg | 7 hours ago

My wife was diagnosed at Mayo (Rochester) with Dementia several months ago. We are on track to start Infusion Therapy in Michigan but we are seeking feedback pro / con regarding the therapy. Also, would like to hear from those who decided against having the therapy, and why. We are investigating every nook and cranny regarding the insidious disease. Would also like to read opinions on MCT oil - seems there are numerous studies taking place.

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