Uncertain Future

killivolt

Joined Jan 10, 2010
836
From what we were told, after insurance, it's 1k USD for MRI PET scan imaging which requires a nuclear isotope dye I.V. injection. Not sure how often but the I.V. drug treatments are every 2 weeks. We've also been told they do the treatments in Jacksonville, which is only another 20 miles further than Savannah which is ~60 miles, so we've increased our "local" search possibilities. I guess once I start treatments, they can give me some idea of a timeline prognosis. I did discontinue my physical therapy for balance issues but still riding the exercise bike. Other than that, it's just the same old routine as before... Carpe Diem!
My wife began her treatment for M.S. She has some good days and some bad, but for the most part good. She still works, her treatment is once a month.

Hang in there.

kv
 

dl324

Joined Mar 30, 2015
18,331
From what we were told, after insurance, it's 1k USD for MRI PET scan imaging which requires a nuclear isotope dye I.V. injection.
I paid less out-of-pocket for an MRI (without contrast) than they would have charged the insurance company. It was for an auto accident, so the full amount charged to insurance would have come out of my settlement.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
I had to have a recent MRI done before they would do the Amyloid PET Scan and if I remember correctly, they charged over 5k USD for it. No idea what the PET Scan cost but they had to get prior authorization from the insurance company to do it. My neurologist that sent the orders in for it told me they had never approved one before I got approved. It will be the same for treatment if I can find someone to take me on to do it. Medical costs have gone through the roof! You can't go to the emergency room for less than thousands of USD.
 

DickCappels

Joined Aug 21, 2008
10,661
SamR said:
From what we were told, after insurance, it's 1k USD for MRI PET
scan imaging which requires a nuclear isotope dye I.V. injection.

That's good to know. I was feeling ripped off by the Thai goverment hospital when they charged me the equivalent of US$600 for that scan (with dye -ouch!).
 

Wendy

Joined Mar 24, 2008
23,798
I just found this thread, I've been hearing a lot of new developments about Alzheimer's it would give me a lot of hope in your case if they catch the disease early they can slow their progression very much. In one of the articles I was seeing it was said if they catch the disease early they can slow the development almost to a crawl. Maybe not showing until the patient passes from other things first. What is worth you have my prayers. Please hang in there and don't lose hope.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
The first stage of Alzheimer's is called the Research stage because it can only be diagnosed by some very serious testing as there are no outward signs of dementia and can last for many years. For the last few years, I've started losing words and names and having problems with short term memory and confusion, so I am already in the mild cognitive impairment stage. I just attributed it to getting on in age (74). But I can tick off most of the boxes for most of the other symptoms as well. I go Wednesday to my local (60 miles away in Savannah) neurologist for a consult to see if they can start the anti-amyloid-plaque treatments and hopefully can get a better handle on the prognosis timeline. That supposedly entails 17 monthly IV treatments and quarterly PET scans to confirm its effect. After that, I don't know. My neurologist in Atlanta (who discovered it while treating me for my post-concussive problems) gives me 7-10 years. I've beat cancer twice and no longer a liver transplant candidate (improved but still being monitored), but this one has no cure and hopefully can be slowed down. I'm trying to stay positive but it's a real bummer.
 

wayneh

Joined Sep 9, 2010
18,106
Please don't ignore SEE: Sleeping, Eating, Exercising. These 3 things are necessary and largely sufficient for good health. You can't possibly do well without paying attention to these 3 things and this becomes especially true when our health is challenged.

I swim in a warm "therapy" pool at my gym and encounter a lot of folks with various conditions. (I'm just there to shake off stiff muscles.) I'm always surprised how little attention these folks pay to these 3 simple keys to health. They eat poorly, don't exercise at all except for their session in the pool, and stay up late watching TV. They wonder why they're obese and sore and sick. Don't be one of those people.

Splurge a little on good food, the stuff without labels. Walk 30 minutes or more each day. Keep good sleep habits. This isn't rocket science. None of us get out alive but we can absolutely live better while we're here.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
Please don't ignore SEE: Sleeping, Eating, Exercising.
My sleep is screwed up (another AD symptom) but I've lost over 30 lbs. and ride my Peloton bike several miles almost daily. We've really cut back on the beef and pork so it's a lot of chicken and fish now with fresh vegetables and fruit. Low fat, lo carbs, and no salt. I try to get out and socialize but that usually entails going to the next town which is 18 miles away or on the radios.
 

metermannd

Joined Oct 25, 2020
472
Just stumbled across this... sorry to hear that, Sam.

Is there any family history? Some of the symptoms mentioned remind me of what my dad (16 years now) and my uncle (just a few weeks ago) went through once their final decline became evident.
For Dad, it was losing the ability to speak (and communication was a key part of the various jobs he had through the decades), and for my uncle, it was his short-term memory fading out.

Wishing you success in stalling it as long as possible.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
No genetic predisposition for AD in the families. My father and his father both died in their 50s from strokes and I and my oldest son have been on blood pressure meds since our 20s. That and colon cancer in mother and her family so I have my polyps harvested yearly along with scanning for cancer since I lost a kidney to cancer that got caught early over 10 years ago. Yeah, the final stage is pretty gruesome. No talk, no walk, no eat, pretty much a vegetable by then... So, it is pretty hard on the family if still providing care at that point. Not something to look forward to...
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
I met with my Savannah Neurologist today and he is going to start me on Lequembi infusions if I come back clean from the genetic testing for the gene fragments Apolipoprotein E ε4 (ApoE ε4) Homozygotes. 15% of candidates test positive for them and they cause Aria which is leakage from the capillary beds in the brain causing brain swelling which is not good. Testing positive will not allow Lequembi treatment. Even with a negative test Aria is still a risk which is why there are a lot of MRIs done to monitor for Aria. He only has one patient currently being treated with Liquembi which is fairly new so has very little trial results even though FDA approved it for treatment. Hopefully it will slow the progression. It's a bit of a Catch 22, damned if you do and damned if you don't.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,491
The DNA test results are Positive, I have E3/E4 heterozygotes. I'll need to talk with my neurologist and see what my options are and find out if insurance will cover Leqembi treatment now. Online research shows increased ARIA incidence but still treatment with Leqembi. In the meantime, they started me on an old Cholinesterase Inhibitor drug, Aricept, which has some nasty side effects, but I am tolerating it. On a brighter note, tomorrow is our 50th wedding anniversary!
 
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