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I don't have Alzheimer's Disease--now what?
Iris L.
Posted: Saturday, December 2, 2017 2:13 PM
Joined: 12/15/2011
Posts: 18354


I've know for a year that I don't have AD, thanks to the results of the Amyvid PET scan that showed no amyloid in my brain.  This is the same test that Michael Ellenbogen had that showed he had no amyloid in his brain.  Michael's wife, Shari, told me about SNAP--"suspected non-amyloid pathology" as an alternative diagnosis.  The other day at my recent visit, my neurologist said  that, of patients who had been diagnosed with AD but who had no amyloid, they were found to have dementia with Lewy Bodies, obstructive sleep apnea, or vascular dementia.  I think in my case, he is leaning towards obstructive sleep apnea (OSA), but I am leaning toward a vascular-related pathology.


Whatever is going on with my brain began 31 years ago in 1986 with severe fatigue and sleep attacks.  This goes along with sleep apnea.  In 1987 I began having severe memory trouble and evidently, performance trouble, such that other people noticed.  In December 1987, exactly 30 years ago this month, although I had been Chief of Pediatrics for my section, I was threatened with probation.  I immediately took a medical leave of absence and never was able to return to work in my beloved profession.  Over the years, many diagnoses which impact memory and cognition were proposed, including depression, anxiety, chronic fatigue syndrome, systemic lupus, Hashmoto's thyroiditis, antiphospholipid syndrome, hypertension and diabetes.  I was on an anti-cholinergic drug which impacts memory and cognition for many years.  I have a family history of Alzheimer's Disease, although not in immediate family members. 


The gist of all of this is that I and my neurologist have no idea what is the cause of my significant decline in intellectual capacity, sufficient to cause me to lose my profession that I had attained a high level of achievement in 30 years ago.  My official diagnosis is still cognitive impairment not otherwise specified, possibly due to systemic lupus, although I know I am technically past the point of cognitive impairment.  So, what next?  The neurologist says I can continue on Exelon patch and Namenda, since they are helping me.  He wants me to continue CPAP for sleep apnea.  He wants to add Adderall, medication used for attention deficit syndrome, to improve my attention and activation.  No further testing was suggested, other than a sleep study to assess my current CPAP titration.


Michael posted that he felt like a fraud after advocating for AD for so many years, despite being found to have no amyloid in his brain.  I don't feel like a fraud, but I feel more like someone incognito in the dementia world.   I have a clinical dementia, but I don't have a dementia diagnosis.  I function like a person with dementia.  I have treatment like a person with dementia.  I forgot to mention above that now my long term memory is beginning to be affected, so whatever I have appears to be progressing.  At the same time, the chronic musculo/skeletal/arthritic pain that I have had for over 30 years is finally lessening, and I am no longer taking pain medication after 30 years.  The lupus is in remission, and my blood tests and blood pressure are in the normal ranges.  My body is changing, and I don't know why.  


What to do?  I love to travel, but for this recent cruise, I had a very hard time preparing myself.  I truly thought this would be my last big trip.  My brain doesn't seem to be functioning well enough for me to be away from home for a long time.  I'll have to see how things go.  The neurologist did suggest Neuroracer, which is a computer program to help with multitasking.  I am going to continue with Best Practices, because I know that lifestyle changes can help vascular and inflammatory dementia.  I am going to continue everything else that I am doing.  


I need to make plans for my future.  Right now I have no written plans for the future.  I hope I can remain in my own condo home for a long time.  My progress is like that of one of my aunt's who became impaired after two strokes.  Although she was not diagnosed as having dementia, she was cognitively impaired, and progressively couldn't take care of herself.  I hope to be able to learn from what was not done for her and make my life more comfortable and more functional than hers was.  I read what other people do, and I try to figure out some things for myself.  Everything that is preparation for a PWD is preparation for me.


Thank you to all who post here, who have been supportive, encouraging and informative for  me.  I would not have made it these past 8 or 9 years without you!


Iris L.




Iris L.
Posted: Saturday, December 2, 2017 3:22 PM
Joined: 12/15/2011
Posts: 18354


One of my major symptoms is invisible and very troubling--it is lack of initiation.  I am perfectly happy to sit and do nothing.  Outsiders might call this laziness, but it it not laziness, it is a sign of my brain disease.  I used to be a go-getter.  Now, not much gets done.


Iris L.


Iris L.
Posted: Saturday, December 2, 2017 6:13 PM
Joined: 12/15/2011
Posts: 18354


My rheumatologist believes my cognitive impairments are due to anti-phospholipid syndrome.  APS can mimic multiple sclerosis, so why not Alzheimer's Disease?


Iris L.


Mimi S.
Posted: Saturday, December 2, 2017 9:06 PM
Joined: 11/29/2011
Posts: 7027


Iris,
Thanks for sharing.

 

You know you have something wrong with your cognition and so I would't worry about what the name is. 

 We understand that AD constitutes about 80% of dementia diagnoses.  Has anyone read about amaloid in that 20%?


jfkoc
Posted: Saturday, December 2, 2017 9:13 PM
Joined: 12/4/2011
Posts: 21127


I agree with Mimi. Something is wrong it does not matter what the name. 

Have you started the cpap again???

 


TheSteven
Posted: Sunday, December 10, 2017 5:32 PM
Joined: 10/11/2014
Posts: 167


There are lots of people who have dementia and were diagnosed with Alzheimer's and upon autopsy there was no amyloid.  I still believe most dementia is caused by mercury and there are many ways to get mercury poisoning, mostly from dental fillings.  Depending on your body's ability to handle mercury you can eat too much tuna and other fish high in mercury and slowly develop dementia problems. Another cause of dementia is bacterial, viral or other parasites.

I am sure you've probably seen my previous posts with links to mercury causing all the issues you described and how other Alzheimer's patients were able to deal with them.  My July 4, 2015 blog lists a lot of the links and books at http://thestevenalztreatment.blogspot.com


BadMoonRising
Posted: Monday, December 11, 2017 12:56 PM
Joined: 4/22/2017
Posts: 335


Iris,

I promise not to take your thread off track but I would appreciate you addressing my concern. I just read where you were previously diagnosed with systemic lupus. My daughter was recently diagnosed with that and I have noticed that her memory deficits are way too severe for her age. She is taking Plaquenil but I assumed that her memory deficits were permanent and probably progressive. Is my assumption wrong? {fingers crossed}


Iris L.
Posted: Monday, December 11, 2017 3:57 PM
Joined: 12/15/2011
Posts: 18354


Steven, thank you for your suggestions.  I had all of my previous metal fillings replaced years ago.  When I was in school, I ate only tuna fish sandwiches, because I didn't like any other type of deli meat.  I don't know what effect that had.  In any case, I did not have any memory symptoms until age 37, approximately 20 years after I left high school and tuna fish sandwiches.

I took another look at your extensive blog.  I will read it over the upcoming days, since it is so extensive.   I too believe that there are many different pathologies that appear as Alzheimer's Disease while the patient is still living.  I am happy for your improvements.

BadMoonRising, just about all lupus patients have cognitive issues.  We talk about it at our support groups.  My rheumatologist told me, "lupus patients can't do anything," when I asked her about how common this is in the patients that she treats.  As Steven noted above, there are many causes for memory and cognitive loss.  Search for all possible contributing factors and treat the ones that are treatable.  


Plaquenil is primarily for pain and constitutional problems, such as fatigue.  I was on Plaquenil for approximately 10 years, and I consider it a success.  It put me into remission.  Plaquenil is not a cure for lupus.  Plaquenil does not work quickly, in fact, it took at least four months before I saw any degree of improvement.  But over the years, I did improve.


In my case, my memory and cognitive problems did improve after treatment with Plaquenil, but by that time, I had already had about six years of antidepressant therapy, with a multitude of strong antidepressants.  I don't know how much effect they had.  I was about the same cognitively, in my own opinion, until 2003, when I had a noticeable decline, and then again in 2007, when I had another noticeable decline.  It was only around this time that I was able to find a competent neurologist who took me seriously, and began a good treatment program for me, resulting in how I am today.


For your daughter, the cognitive issues that you see may be related to lupus with or without other causes.  But yes, lupus alone does cause significant cognitive impairments to varying degrees.  Lupus does affect the brain.  But the cognitive issues are not progressive, leading to death, as they are for persons diagnosed with a dementia.  Lupus can be deadly but only in certain conditions.  Lupus is no longer considered a terminal illness, as in the past.


Is she working?   She may be able to continue with work accommodations.  What is her rheumatologist telling her about her cognition?  Lupus is a disease with much variability and that changes over time.  You can't make any predictions.


I hope this answers your question.  As you can see, I am still asking my own questions.  Best wishes to your daughter.  How old is she?


Iris L.  


BadMoonRising
Posted: Monday, December 11, 2017 10:14 PM
Joined: 4/22/2017
Posts: 335


Thanks Iris.

She is in her late 30's. I don't know if she told the doc about her memory issues, but I doubt she did. She's always had ADD type memory issues, i.e. locking herself out of her car, home etc. It's just a way of life in my family. But I can tell this is different so I did suggest she have it checked out. It seems I passed on to her more than a few rotten genes, including at least one associated with lupus, so there's the mother's guilt in addition to the concern.

Her job is such that she needs to stay mentally sharp so I really really hope that her memory does not worsen. If I understand you correctly the memory problems that are caused by the lupus may not progress. I'm going to hold on to that.

Thanks again, now back to your thread.


Iris L.
Posted: Tuesday, December 12, 2017 1:36 AM
Joined: 12/15/2011
Posts: 18354


BadMoonRising, here is some information about work accommodations that you might pass on to your daughter.  Although they are for AD, they might still help her.

Accommodation Ideas for Cognitive Impairment

http://askjan.org/media/cogn.htm


Accommodation and Compliance Series:

Employees with Alzheimer's Disease

http://askjan.org/media/Alzheimers.html

Introduction


JAN's Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information.


The Accommodation and Compliance Series is a starting point in the accommodation process and may not address every situation. Accommodations should be made on a case by case basis, considering each employee's individual limitations and accommodation needs. Employers are encouraged to contact JAN to discuss specific situations in more detail.


For information on assistive technology and other accommodation ideas, visit JAN's Searchable Online Accommodation Resource (SOAR) at http://AskJAN.org/soar.

..............................................

I hope she is visiting the Lupus Foundation website and also attending a Lupus Support Group.  They were invaluable to me when I was first diagnosed, and for many years afterwards.  I have recently resumed attending my local Lupus Support Group in order to help the newly diagnosed.

She might also read books about adult ADD in women, because the manifestations are different in women vs men.  In this day and age, lupus, for the most part, is not life-threatening, but it certainly is life-changing.  She will need to constantly assess her life situation and make accommodations, and stay on the lookout for complications.  It's hard, but doable.  Again, best wishes to her and to you.


Iris L.


Larrytherunner
Posted: Saturday, December 16, 2017 12:13 PM
Joined: 2/26/2016
Posts: 278


Mimi said that Alzheimer's cases make up about 80 percent of dementia cases. If Alzheimer's is defined by having both dementia and abnormally high levels of beta amyloid, then I believe that the percent of Alzheimer's cases could be much lower. So what do you call those cases of dementia which have Alzheimer's like symptoms but without beta amyloid. Maybe we need a new name if there isn't a name already.

I think the key to treating Alzheimer's and dementia is treating the chronic inflammation in the brain after the initial stress. When cells come under stress, immune cells send out messengers which enter surrounding cells, and inflammation begins. Maybe in most cases, beta amyloid is the factor that starts the chronic inflammation. In other cases the starting factor could be mercury or lead or other heavy metals or certain bacteria or air pollution or an overactive immune system or a combination of many factors. You may not be able to control the starting factors, but you may be able to control the insuring chronic inflammation in a safe way by blocking the initial inflammation messengers, among them which are the leukotrienes. When leukotrienes are blocked from entering the surrounding brain cells, there is reduced inflammation, tau destruction and cell death.

I have been taking the leukotriene blocking drug montelukast (brand name Singulair) for 22 months. The drug is FDA approved for reducing the number of asthma attacks in asthmatic patients, but there is evidence that it could be used to treat Alzheimer's. Ever since I have been able to get the generic version here in Ghana (I was taking the much more expensive Singulair), I am now taking 20 mg twice a day. The great thing about taking an anti-infammatory drug is that you know very quickly if it is working. You don't have to wait 6 months or a year. My extreme mental fatigue and occasional confusion disappeared within a week.

By the way, the pharmaceutical company Intelgenx is sponsoring a clinical trial for montelukast as a treatment for Alzheimer's and dementia under the supervision of the Canadian government in early 2018. Hopefully we will get some feedback by the middle of the year.

I am including an audio of Professor Menachem Rubinstein interviewed by Dr Norman Swan MD on Australian radio. Professor Rubinstein and team discovered the Mgst2 gene, which controls the activation of leukotriene C4, which is thought to be actively envolved in the progression of Alzheimer's and dementia.

http://www.abc.net.au/radionational/programs/healthreport/leukotrienes-used-block-stress-asthma-free-radicals/7350034

Lane, if you want to make a comment, please don't confuse the issues, change the subject or give us alot of biochemistry that nobody understands. Thanks


jfkoc
Posted: Saturday, December 16, 2017 2:25 PM
Joined: 12/4/2011
Posts: 21127


Larry....there is LBD, PDD, VA, FTD and other have been mentioned. I believe that many diagnosed with AD actually have something else. My husband went from MCI to PDD to LBD as things progressed.

There seems to be an unlimited number of diseases that inflammation affects. Very interesting.


Larrytherunner
Posted: Saturday, December 16, 2017 4:21 PM
Joined: 2/26/2016
Posts: 278


I am not familiar with many of the different types of dementia, but sometimes the same drug can treat many different types of illnesses. I am convenced that inflammation is a major part of most dementias, and it is the best route for research and treatment.
Iris L.
Posted: Saturday, December 16, 2017 9:49 PM
Joined: 12/15/2011
Posts: 18354


Thanks for posting, Larry.  After the Amyvid PET scan results, my neurologist suggested that the next step would be searching for evidence of inflammation in the spinal fluid, but my rheumatologist said the lupus was inactive.  I also believe that inflammation is the etiology of many diseases.  I'm glad you have found improvement with montelukast.  I had been on the anti-inflammatory drug Celebrex for many years, just stopping it this past September, three months ago.  It has been suggested on this board that the Celebrex might have been the reason for the slow progress of my condition.  I will have to rethink stopping the Celebrex.

Iris L.


Mimi S.
Posted: Sunday, December 17, 2017 9:07 AM
Joined: 11/29/2011
Posts: 7027


Larry.

I am wondering if that 80% I quoted i

needs to be revised downwards now that the presence of amalyod 

must get.     be verified. 


Iris L.
Posted: Sunday, December 17, 2017 2:12 PM
Joined: 12/15/2011
Posts: 18354


Mimi, IMO, I think it is important to determine which patients have classic Alzheimer's Disease and which patients have Alzheimer's Disease from other etiologies.  The other etiologies might fall into the category of "dementia not otherwise specified."  


However, I doubt if amyvid PET scans will become a routine part of the diagnostic process in the near future due to the cost.  Thus, it will be up to us patients and family members in conjunction with our knowledgeable doctors to do our own research about possible etiologies and complementary and alternative treatments.  We have seen on these boards how some members have had success with various treatments.  


The people in authority must continue to devote attention and funds to research in this area.   More and more people are expected to develop one of the dementias, and the age is getting younger.


Iris L.


Larrytherunner
Posted: Sunday, December 17, 2017 2:35 PM
Joined: 2/26/2016
Posts: 278


Mimi, the percentage is something hard to measure and depends on who is measuring it. The main idea was that they may need a better definition of what is Alzheimer's. Here in Ghana, doctors I have talked to only use the term dementia.
Mimi S.
Posted: Sunday, December 17, 2017 2:43 PM
Joined: 11/29/2011
Posts: 7027


Hi Iris,  I mostly agree. .  Testing for amyloid is too expensive for most. So to get the for site diagnosis what can be done?

Try to make sure it is

not a type for Aricepy and similar meds are contraindicated.  I think the number 

of Early Onset may not be

increasing but the

possibility of

such a diagnosis is become more accented.  How

often do we hear

the gmail younger person taking years instead

of

months for a

diagnosis?


Larrytherunner
Posted: Sunday, December 17, 2017 2:55 PM
Joined: 2/26/2016
Posts: 278


Thanks for responding, Iris. I think Celebrix and other NSAID's are not the way to go, and especially not Celebrix, which has serious black box warnings about long term use.

When I was writing about inflammation, I was refering to leukotrienes secreted by microglia, the brain's immune cells, which are similar to mast cells, which are stationary immune cells in other organs in the body, which also secret leukotrienes. NSAID's affect Cox1 and Cox2, but it doesn't seem to affect leukotriene initiated inflammation.

I understand you are a medical professional. Check out montelukast. It was FDA approved in 1998 and has a good safety record. You will see that it is much safer than NSAID's for long term use for adults. You can also google "montelukast and alzheimer's" and see a lot of good information and scientific research which you can sort out. 

I started taking montelukast almost 2 years ago, and my extreme mental fatigue and occasional confusion completely disappeared after one week. Montelukast is the only drug I have taken in the last two years.

Since you are a medical professional, why don't you do a short term clinical trial for yourself with your doctor's approval. You could start 20 mg twice a day for one or two weeks. If you are like me, you will feel better very quickly. Because it has to pass through the blood brain barrier, it requires a higher dosage than a treatment for asthma. If it doesn't work in the short term, then at least you will know.


Larrytherunner
Posted: Sunday, December 17, 2017 3:35 PM
Joined: 2/26/2016
Posts: 278


By the way, I will be 70 years old in 10 days and I feel great!
Iris L.
Posted: Monday, December 18, 2017 12:05 AM
Joined: 12/15/2011
Posts: 18354


Thank you Larry.  I will do some googling and investigate and bring this up with my neurologist.  Happy Birthday!  I'm glad you are feeling so great!

 

Iris L.

Michael Ellenbogen
Posted: Monday, December 18, 2017 7:46 AM
Joined: 11/30/2011
Posts: 4384


 You may find this article interesting. I believe this test will become part of standard test soon.

 

https://alzimpact.org/blog/post/id/106

 


Mimi S.
Posted: Monday, December 18, 2017 8:30 AM
Joined: 11/29/2011
Posts: 7027


Thanks  Michael,

Very interesting.

And all I can say is wow!

And I wonder if the amayloid is the, or one of the, deciding factors in the speed of progression of the disease.  It might be that those of us who are still around after many years and who have been diagnosed by dementia experts don't have it.  In my case there is a strong possibility that the massive doses of a med for another neurological disease   are the cause of the slow down.

Still so much to learn.

And as far as  I am concerned, other than the correct meds, the name means little. 

We deal with our symptoms.


Iris L.
Posted: Monday, December 18, 2017 4:00 PM
Joined: 12/15/2011
Posts: 18354


Good to know.  Thanks for posting, Michael.  Now that they have met their enrollment goal of 18,000, what about the rest of the many patients who could benefit from the Amyvid PET scan?


Like Mimi, I agree that dealing with my symptoms is what I am focused on now.  The researchers are working on the area of diagnosis, which I am very excited about.  But no professional is working on helping with my daily activities.  Like the Beatles, I get by with a little help from my friends, the Internet and the grace of God.


Iris L.


Lillabet
Posted: Friday, December 29, 2017 7:08 AM
Joined: 12/25/2017
Posts: 23


Hi, Iris L.,

Thank you for sharing your story - my heart goes out to you over your frustration. I am new to this site, but I have noticed that your posts offer such great information and support for so many. I wish the best for you.

You are a blessing to everyone here!

Lillabet

 


Iris L.
Posted: Friday, December 29, 2017 1:31 PM
Joined: 12/15/2011
Posts: 18354


Thank you, Lillabet.  I am personally frustrated, but I am filled with joy on being on these message boards with such caring people.  I have learned so much and I have been supported so much and brought back from the brink of despair many times!


Iris L.


MissHer
Posted: Saturday, January 6, 2018 10:37 AM
Joined: 11/13/2014
Posts: 2366


I agree with Nadine. Please please do not stop posting! The PWD MCI whatever ..your insight is invaluable!! I would not know what's (really) going on if it wasn't for you precious people! I also care what happens to you and worry when your not posting. The boards would not be what they are without you!
mish
Posted: Monday, January 8, 2018 12:59 PM
Joined: 6/21/2012
Posts: 439


i miss you my dear friend. i am very glad that you are back on the boards yet am so sorry of hearing about your sorrows. I will get in touch with you so. it is a bad day for me. i just wanted to say i missed you dearly.