Alzheimers care and treatments: Consult with Mayo Clinic?

@jlharsh I so appreciate your note tonight I had a long day with my husband. he didn't have a good day. But we've had to move so many times, we left the hotel today, now in a rental for 3 1/2 months. We had to move out of our house due to mold issues, and we've struggled to try to a home equity loan approved to do the work. The bank has one speed, slow. So we have really been in limbo at that same time he was diagnosed with MCI. That back and forth, I believe isn't helping my husband at all, so I'm hoping I can settle things down. I just have to figure out a way to be more patient with him. I found his neurologist from my primary care doctor, when both my husband and I went in to see her. Dr. Jeffrey Gelblum runs his neurology practice in Miami and in Jupiter FL. He has a group called First Infusion Group, that he's affiliated with and runs. That group administers the GUIDE program, which is Medicare approved, where their group does the infusions at Dr. Gelblum's office. My understanding is that there are lequembe clinics where those treatments could be given if we had to travel, but for now, we are staying in one place locally to make sure he doesn't have brain swelling and bleeding as a side effect. The other providers you reference as the care team, are the affiliations he has with certain labs, that ONLY do his petscans, etc., Then his practice for visits, and his practice that also includes a dedicated team, First Infusion Group where there is a qualified RN lequembe people who do the infusions. In that same lab, there is a PA, looking at the MRI results, etc., along with the doctor, etc. Yes ,the schedule follows: every 2nd infusion, 4th and 7th, he has an MRI. After that, he goes to the 14th infusion, then another MRI. If something shows up on the MRI, he doesn't have that next infusion. My husband goes for his 5th infusion this coming Monday. He seems okay, but he's not eating a lot and that worries me. @japlok was after the 4th as you said, but I was told by Dr. Gelblums office that the guidelines recently changed pushing the MRI up sooner than the 4th. What I realize is we as caregivers have to be all over this....because sometimes the communications with the doctor's staff - because they have so many people getting treatment, falls short. I had to come home and type a schedule. Just to keep it together. Yes, you are correct I don't believe there is a cookie cutter approach to addessing a medical challenge. It's interesting I sold a neighbor's house in 2023, and I was good friends with the wife. She had MCI - but much farther along than her husband wanted to believe. Their adult children were in denial. The husband in denial. Being with my neighbor and trying to help her every day, was like a primer for me, when my husband was diagnosed. Little did I know, that two years later, he would have a similar diagnosis. Life sure deals us challenges.....we just never know. Thanks for writing to me. Appreciate this group alot.

@jlharsh I've been actively reading, everything on this Mayo Connect support group, and I'm really thinking of getting a second opinion on my husband's MCI. He's taking infusions, lequembe on the 4th one, but in reading a lot of comments, I'm seeing that sometimes there can be a misdiagnosis. I called central scheduling Mayo Jacksonville, will need to call back tomorrow. DId anyone else out there get another 2nd opinion that may have varied from the first diagnosis? Thanks, to all caregivers and your sharing.

Hi all,

Just wanted to give you an update on Diana's infusions. Next week she will get her 6th infusion. So far things are going smoothly with no major side effects. She has some nausea and fatigue that slows her down....but definitely not out!!! For her 6th infusion she will be a hospital that is only about 10 minutes away from where we live. Much better than the 45 minute drive. Perfect timing with winter around the corner.

Well wishes to everyone.

Just read this and thought I should share it. Here is the link to a weekly email I get about AD/Dementia. https://alzheimersweekly.com/13-of-dementia-diagnoses-may-be-reversible-hepatic-encephalopathy/

This is the headline. "13% of Dementia Diagnoses May Be Reversible — Hepatic Encephalopathy". You can read the article...interesting.

This article about mistaking hepatic encephalopathy as Alzheimer’s is interesting, @japlok and such good news to see science is refining the scope of disease.

What particularly struck you about this article? Do you know if this has been ruled out with your wife?

By the way, I read your comment above about switching injections to a hospital considerably closer to you and your wife. I am curious how this came about.

@japlok This was an extremely interesting article! I’d suggest that people carry it with them so they can ask their doctor about it.

@jlharsh Hi Janelle, yes, interesting article. The thing I wonder about is how old is this information, are doctor's aware of this, and if so why isn't this talked/written about more. Now what concerns me is why this is not a required test for those diagnosed with dementia/AD.

My wife has a regular PCP appointment in a couple of weeks and I was going to make sure she requested the liver screening, but as I write this there is no reason to wait that long. We will be contacting our doctor on Monday.

At the time the infusions started Indianapolis was the closet location. They have since opened additional locations to get infusions, and one was at the same hospital we see our PCP just 10 minutes away. We asked if Diana's infusions could be done there and everything worked out.

@becsbuddy Hi Becky, good suggestion, even if it is a long shot...that is all we have right now.

@japlok, it does take a super long time from once something is thought to be important to it actually being integrated into the standards that are followed when we go to a medical provider. It seems like the information changes quicker than the communication can happen, which makes sense to me until it affects me. I feel your frustration!

I believe you mentioned your wife’s diagnosis was at home and you also made a trip to Mayo Clinic. What type of information was reviewed or type of process did she go through at each location? Were they identical, similar…completely different? It would be interesting to ask your questions to everyone she has seen.

@jlharsh Hi Janelle, the process both here in Indi and at the Mayo Clinic would have essentially been the same if it weren't for my insurance hiccup at Mayo. At Mayo we only met with the doctor, and he went over the MRI and PET scan that we had done at home. The biggest benefit of visiting the Mayo Clinic besides the quality of care they provide is that the Mayo doctor actually went over the scans with us, something our doctor didn't do.

I actually asked Diana's doctor about hepatic encephalopathy and am awaiting his response. Will let you know what his response is.

Ken