Uncertain Future

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SamR

Joined Mar 19, 2019
5,539
Another brain MRI this morning.
This is brain swelling:
"ARIA-E: Present-no new ARIA E Decreasing sulcal effusion in the right parieto-occipital region measuring approximately 4.5 cm in length. Resolved sulcal effusion right temporal lobe."

This is brain blood vessels leaking, still "More than 15":
"ARIA-H: Present-no new ARIA H Stable multiple punctate foci of susceptibility artifact in the right parieto-occipital region. Other: No acute infarction, intracranial hemorrhage, mass, or abnormal extra-axial fluid collection. Stable atrophy and chronic small vessel ischemic change in the cerebral white matter. Flow voids are maintained in the major intracranial vessels implying patency. Orbits are normal. Paranasal sinuses and tympanomastoid spaces are well pneumatized."

So, it's still there and some of the swelling has gone down but lots of tiny capillary beds still bleeding. The parieto-occipital region of the brain is where you process spatial sensory inputs to generate purposeful movements about the space you are within without bumping into things. Or to be able to see something and accurately put your finger on it. Which would explain why I've been a bit wobblier and clumsier lately including a couple of falls and lots of near misses. I feel alright and the headache I was having from the infusions had lessened and I thought this brain damage from the infusions would have been resolved by now but seems that was just wishful thinking. I have also run across new some articles suggesting that Liqembi infusions have no real impact on Alzheimer's and due to the expense of 18 months of treatment and the efforts expended on them that it is not really worth in the end what toll it takes on the patient. Go figure... Also, there are lots of "Snake Oil" treatments and "Miracle Cures" being marketed to seniors for the various dementias. But hey, if you think you feel better taking them, who am I to argue their real benefits.
 
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cmartinez

Joined Jan 17, 2007
8,862

Thread Starter

SamR

Joined Mar 19, 2019
5,539
The neurologist did finally tell me that the MRI said I was "stable" and was apparently unconcerned with the results. He did change me from Aricept due to its side effect of giving me headaches (which was why I went to him for post-concussive injury headaches) and put me on another med. Unfortunately, it was just as bad and also caused fatigue and had me sleeping a LOT so I'm back on Aricept as the better of 2 evils. I'm to see him again this coming Thursday so will see what he has to say now then.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,539
Oh yeah, my wife sent me a link to an article (can't find or I'd link it) about some promising studies being done in Japan with Adenosine? (I think, can't remember) in reducing Amyloid Plaque. Apparently good result in animal trials but no human trials as yet. So, there is plenty of work being done in this area but certainly not the attention and dollars being given to it as AIDS, Covid, and other "more deadly" diseases. Unfortunately reducing the Amyloid Plaque cannot bring back the dead neurons, and the information they contained, that have already died
 
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Thread Starter

SamR

Joined Mar 19, 2019
5,539
Went to neurologist yesterday and saw the MRI pictures. A bit shocked at the extent of the swelling but the latest imaging shows almost all of it gone. The microbleed nodules (several mm in diameter clots) are still present but should be dissolved eventually. So everything is stable. They did give me another cognitive test (more in depth than what I usually get for my annual physical) and I scored 1 point higher than the last one so I guess that's good news at least. No more Leqembi though. I recently read an article questioning the efficy of it in relationship to the expense (~1K every 2 weeks for 36 weeks my cost) and effort required for all of the infusions and it is controversial. It is some very serious treatment with not much in the way of results. Sorta grasping at straws. Anyways, good news at least.
 

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SamR

Joined Mar 19, 2019
5,539
Another Brain MRI Monday. ARIA-E Swelling is gone but still 15+ ARIA-H microbleeds... The 1-2 found after the 2nd Liqembi treatment is in the Mild range and would be acceptable but not this. I had 0 before I started the Leqembi treatments that have been discontinued after the ARIA-E was discovered. >15 is considered in the Severe range and doesn't seem to be coming back down. Haven't heard from my neurologist yet. Doesn't seem to affect me that I can tell but still is concerning.
 

WBahn

Joined Mar 31, 2012
33,254
Another Brain MRI Monday. ARIA-E Swelling is gone but still 15+ ARIA-H microbleeds... The 1-2 found after the 2nd Liqembi treatment is in the Mild range and would be acceptable but not this. I had 0 before I started the Leqembi treatments that have been discontinued after the ARIA-E was discovered. >15 is considered in the Severe range and doesn't seem to be coming back down. Haven't heard from my neurologist yet. Doesn't seem to affect me that I can tell but still is concerning.
I don't know what any of that means, but based on your description is does sound concerned. Hopefully the neurologist can shed more light and offer a positive path of treatment going forward. Thoughts and wishes, my friend.
 

Thread Starter

SamR

Joined Mar 19, 2019
5,539
ARIA = Amyloid-Related Imaging Abnormality -E edema/swelling -H hemorrhaging/bleeding
Due to the Liqembi treatments to remove the Amyloid Plaque from my brain which is caused by Alzheimer's Disease. Apparently, removing it caused excessive fluid leakage/blood plasma from the blood vessels and blood platelet leakage as well causing 15+ sub-10mm clots. In this case the cure was worse than the disease...
 
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Thread Starter

SamR

Joined Mar 19, 2019
5,539
There is lots of research being done with some success at various levels. A lot of anecdotal information is also out there pushing one snake oil or another. And some new medicines as well. The current push being the removal of amyloid plaque and its tau entanglements from the brain. The definitive diagnosis is based upon an Amyloid Plaque PET Scan which shows that I have it. In order to be treated by reducing the plaque I was required to take a DNA test looking for 2 specific genetic codons which rule out treatment. I only had one of them, so I was allowed treatment with one of the new amalyoid plaque removal drugs Leqembi. That entails going to a hospital Infusion Center (where Chemotherapy Infusions for cancer are done) that will administer Leqembi 70miles away and having the medicine introduced intravenously in about an hour session every 2 weeks for about a year. Since I had one of the disallowing DNA Codons I was given an MRI after the 2nd session which showed a few ARIA-H microbleeds (Amyloid‑Related Imaging Abnormalities – Hemorrhage). No big deal as folks my age may typically have a few microhemorrhages. And again after my 4th infusion. That MRI showed both 15+ ARIA-H brain bleeds (they quit counting after 15 which is already too many) but also ARIA-E (Amyloid-Related Imaging Abnormalities – Edema) serum fluid leaking causing swelling. Not only was I leaking blood but also serum as well causing brain swelling. That was the end of treatment with Leqembi. I've had 2 more MRIs since showing a reduction and elimination of ARIA-E brain swelling but no real reduction in the ARIA-H microbleeds. Still 15+. The removal of amyloid plaque caused my capillary beds in the brain to start leaking after the gunk holding them together was removed. I was also upon diagnosis started on Aricept (donepezil) which is used for both Alzheimer's and Dementia to help increase memory function. I can't tell that it did, but it did increase my constant headache from the wreck that sent me to the neurologist in the first place. So, I have stopped taking that as well and now no treatment at all. And if that wasn't enough, my wife had a diverticulitis that abscessed and perforated her colon requiring hospitalization for peritonitis and surgery to close the hole. She will be going back next week to have her colon resected to remove the damaged section with about a week in the hospital.
 

cmartinez

Joined Jan 17, 2007
8,862
I'm glad to hear you're fighting this thing with all you've got, Sam ... to quote the Rocky character, from the movie Project Hail Mary: "Words of encouragement!" ...
 
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