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Neurologist update
Iris L.
Posted: Tuesday, May 8, 2012 4:32 PM
Joined: 12/15/2011
Posts: 17948


I visited the neurologist for updating after the six hour neuropsychologic testing results.  He continues to believe my cognitive impairments are related to lupus and auto-immunie dysfunction, even though the lupus is in remission. 

He referred me to a center in Beverly Hills that does stem cell treatment.  He has another patient with lupus and cognitive impairment who was improved with stem cells.

He said I can continue Exelon patch and Namenda because they improve brain function. 

He gave me samples of a new antidepressant, Viibryd, because I told him I am having trouble sleeping and I am still dealing with depression.
 

He said what I have is not Alzheimer's disease.


I need time to look into stem cell rx.  Meanwhile, I'm going to continue what I have been doing with Best Practices and work on aromatherapy. 
 

 

Iris L. 

 


Lisa428
Posted: Tuesday, May 8, 2012 4:45 PM
Joined: 12/5/2011
Posts: 795


Hey Iris,

 

This is good news.  How are you feeling about all of this?

 

Yes, please check into that stem cell stuff.  I have heard it's the latest and greatest!!

 

I'm glad your meds are still helping you.  Please, let me know about that new antidepressant.  Never heard of it!  Hope it helps you.

 

Thinking of you.

 

Peace and Hope,

Lisa


Myriam
Posted: Tuesday, May 8, 2012 4:50 PM
Joined: 12/6/2011
Posts: 3326


Good that you're getting some options!
Lost Cajun
Posted: Tuesday, May 8, 2012 5:28 PM
Joined: 5/8/2012
Posts: 3


You are fortunate to live in California where doctors are obviouly more up to date on traetment options.  I hope indeed that your condition is not alz.  I wonder why we don't hear more about the use of stem cells?  If I were given the opportunity, I certainly would want to try it.
Iris L.
Posted: Thursday, May 10, 2012 12:52 AM
Joined: 12/15/2011
Posts: 17948


Lisa428 wrote:

Hey Iris,

 

This is good news.  How are you feeling about all of this?

 

 

 

,


Thank you for responding, Lisa.  I feel really badly right now.

The neurolpsychologist told me that I had declined on testing.
 

 

I feel like I have declined. 

 

Yet the neurologist never mentioned the neuropsychological testing results nor my decline. 

He talked about lupus patients feeling "foggy."  I do not feel "foggy."    I have not felt "foggy" since I began CPAP treatment for sleep apnea over a year ago.
 


I feel misunderstood.

I feel like I have no one to ask for medical advice.


Iris L. 


Mimi S.
Posted: Thursday, May 10, 2012 9:07 AM
Joined: 11/29/2011
Posts: 7027


Iris, What's that old saying: as rose is a rose.

 
You're the one with the MD degree and the smarts.
 
Something I've been pondering. If a person has dementia symptoms such as you have and they are not caused by something treatable, such as B-12 or even a brain tumor, can it be that there is another facet of dementia that is dementia but we can't test for it?
 
How do the neuro-psych's of these people differ from that of those of us with dementia?
 
If we compared PET Scans, how would they be the same of differ?

Lane Simonian
Posted: Thursday, May 10, 2012 9:25 AM
Joined: 12/12/2011
Posts: 5089


I think the aromatherapy will still help you even though you were not diagnosed with Alzheimer's disease and am glad that you are using it along with Best Practices (which should help as well).  I am beginning to think that almost any condition or disease that results or can result in memory loss--Alzheimer's disease, Parkinson's Disease and other dementia with lewy bodies, frontotemporal lobe dementia, Multiple Sclerosis, Down syndrome, stroke, traumatic brain injury, diabetes, AIDS, hepatitis C, lupus, sleep apnea, etc.--is caused by peroxynitrites and can be partially treated with essential oils.   

 

9. Women are reported to produce more nitric oxide than men, possibly explaining the gender bias seen in CFS [Chronic Fatigue Syndrome]. A similar gender bias is seen in autoimmune diseases characterized by excessive peroxynitrite (i.e. lupus, rheumatoid arthritis). 

 

Many essential oils help reduce levels of peroxynitrites and reverse part of their damage (including autoimmune responses to inflammation).   

 

http://www.naturaltherapypages.com.au/article/Lupus (this article does not say it but essential oils used for massage should always be diluted).  This article may still be relevant even though your lupus is in remission.

 

The stem cell work sounds promising and is worth researching and considering. 

 

I suppose not being diagnosed with Alzheimer's disease would generally be a cause for celebration, but then again it raises uncertainty (including the accuracy and implications of the diagnosis) and potentially changes a person's focus. Whatever the cause of the memory loss, you have already taken good action against it.  

 


Iris L.
Posted: Thursday, May 10, 2012 12:05 PM
Joined: 12/15/2011
Posts: 17948


Mimi S. wrote:
 
Something I've been pondering. If a person has dementia symptoms such as you have and they are not caused by something treatable, such as B-12 or even a brain tumor, can it be that there is another facet of dementia that is dementia but we can't test for it?
 
How do the neuro-psych's of these people differ from that of those of us with dementia? 

  

  

  

If we compared PET Scans, how would they be the same of differ? 


 

 

Mimi, I would like to know the answers to these questions too.  Where can I go to get these answers? 

My field was pediatrics.  I had NO experience with the diseases of older adults.  Everything I've been learning about dementia in the past three years is new knowledge for me.

 I feel like medically I have nowhere to turn. 



Iris L.

 

 

 


Iris L.
Posted: Thursday, May 10, 2012 12:41 PM
Joined: 12/15/2011
Posts: 17948


Lane Simonian wrote:

 I think the aromatherapy will still help you even though you were not diagnosed with Alzheimer's disease and am glad that you are using it along with Best Practices (which should help as well).  I am beginning to think that almost any condition or disease that results or can result in memory loss--Alzheimer's disease, Parkinson's Disease and other dementia with lewy bodies, frontotemporal lobe dementia, Multiple Sclerosis, Down syndrome, stroke, traumatic brain injury, diabetes, AIDS, hepatitis C, lupus, sleep apnea, etc.--is caused by peroxynitrites and can be partially treated with essential oils 

 

9. Women are reported to produce more nitric oxide than men, possibly explaining the gender bias seen in CFS [Chronic Fatigue Syndrome]. A similar gender bias is seen in autoimmune diseases characterized by excessive peroxynitrite (i.e. lupus, rheumatoid arthritis). 

 

Many essential oils help reduce levels of peroxynitrites and reverse part of their damage (including autoimmune responses to inflammation).   

 

http://www.naturaltherapypages.com.au/article/Lupus (this article does not say it but essential oils used for massage should always be diluted).  This article may still be relevant even though your lupus is in remission. 

 

The stem cell work sounds promising and is worth researching and considering. 

 

I suppose not being diagnosed with Alzheimer's disease would generally be a cause for celebration, but then again it raises uncertainty (including the accuracy and implications of the diagnosis) and potentially changes a person's focus. Whatever the cause of the memory loss, you have already taken good action against it.  

 


Thank you for the information and the link, Lane.  Lupus causes dysfunction in the small blood vessels of the body.  I personally believe this is the cause of my cognitive impairments.  When I read posts about people with vascular dementia, I recognize my symptoms.  I'm less concerned about Alzheimer's than I am about vascular impairment/dementia. 

 

The talk about stem cells seemed to have come out of left field.  He startled me when he suggested stem cells.  When I get a chance, I may look into it. 

 

Iris L. 


Lisa428
Posted: Thursday, May 10, 2012 1:06 PM
Joined: 12/5/2011
Posts: 795


Hi Iris,

 

Sorry you are feeling down and misunderstood.  I do know those feelings.  I hope your new antidepressant can help you.

 

Perhaps you should call the doctor to discuss your feelings and neuropsych test results???  Maybe he/she isn't understanding what you are saying??  Perhaps clarification is needed.

 

Thinking of you.

 

peaceand Hope,

Lisa


Lane Simonian
Posted: Thursday, May 10, 2012 2:11 PM
Joined: 12/12/2011
Posts: 5089


I didn't know about the connection between vascular dementia and lupus before but it is there.  The good news (if one can call it good news) is that vascular dementia and Alzheimer's disease share similarities and probably can be treated similarly.  In the case of vascular dementia the reduced blood flow to the brain leads to less oxygen for the brain which leads to the formation of peroxynitrites which lead to even less blood flow to the brain and memory loss. 

 

 

Curr Drug Targets. 2012 Feb;13(2):272-84.

Targeting nitrosative stress for neurovascular protection: new implications in brain diseases.

Source

Institute of Pharmacology, Toxicology and Biochemical Pharmaceutics, Zhejiang University, Hangzhou, China.

Abstract

Nitric oxide/peroxynitrite signaling is associated with manifold neurovascular pathogenic cascades that lead to neurodegenerative diseases, including ischemic stroke, Alzheimer's disease, and vascular dementia. Considerable evidence suggests that reactive nitrogen species as mediators of nitrosative stress could damage biomolecules and subsequently facilitate the breakdown of the highly-structured cellular machinery. Herein, we focus on nitrosative stress signaling, which is intimately associated with endothelial cell injury and blood-brain barrier damage in stroke and neurodegenerative diseases. Unraveling the detrimental role of nitrosative stress signaling in initiating and driving neurovascular pathogenesis may lead to the development of novel vasoprotective strategies via restorative therapies for brain diseases.

 

And just to complete the picture with essential oils. 

 

Fitoterapia. 2005 Jul;76(5):481-3.

Essential oils of commonly used plants as inhibitors of peroxynitrite-induced tyrosine nitration.

Source

Dipartimento di Chimica Bioorganica e Biofarmacia, Università di Pisa, via Bonanno 33, 56126 Pisa, Italy. chersil@farm.unipi.it

Abstract

The essential oils obtained from fifteen relevant and commonly used plants belonging to Cruciferae, Lamiaceae, Lauraceae, Apiaceae, and Zingiberaceae were screened using an in vitro model of peroxynitrite-induced tyrosine nitration. Almost complete inhibition of 3-nitrotyrosine formation (91% at 300 microg/ml) was achieved only with the essential oil obtained from the leaves of Laurus nobilis. 1,8-Cineol, accounting for a 50% of this essential oil, which resulted as inactive in this model, thus evidencing a major role for the minor volatile compounds present in the leaves.

 

 

 

 

 

 

 
 
 
 

 

 

And from a website called Home Remedies: What is vascular dementia?: 
 
Further damage to the brain can be prevented only if vascular dementia is detected in the initial stages. Medications to improve blood circulation to the brain and to avoid strokes are two primary ways to curb vascular dementia.
 
To promote blood circulation to the brain, regular exercises, simple breathing exercises and meditation are important too. Aromatherapy and a regular head massage also improve blood circulation. 
 
One of these days better treatments will be available, but the notion that there are no effective treatments available now I think is incorrect.  That's the most hope I can give for now. 

Iris L.
Posted: Thursday, May 10, 2012 2:43 PM
Joined: 12/15/2011
Posts: 17948


Lane Simonian wrote:

I didn't know about the connection between vascular dementia and lupus before but it is there.  The good news (if one can call it good news) is that vascular dementia and Alzheimer's disease share similarities and probably can be treated similarly. 

 

 

 

 

And from a website called Home Remedies: What is vascular dementia?: 
 
Further damage to the brain can be prevented only if vascular dementia is detected in the initial stages. Medications to improve blood circulation to the brain and to avoid strokes are two primary ways to curb vascular dementia.
 
To promote blood circulation to the brain, regular exercises, simple breathing exercises and meditation are important too. Aromatherapy and a regular head massage also improve blood circulation. 
 
One of these days better treatments will be available, but the notion that there are no effective treatments available now I think is incorrect.  That's the most hope I can give for now. 

 


This IS giving hope, Lane, to know that there are people who do understand and that there are steps I can take right now to help myself.  

A vague idea of possible stem cell therapy is not hopeful to me.  It might work, but I need some positivity NOW!
 

 

Thank you so much for doing this research for me and locating information on the link between lupus and vascular dementia.  This is the type of information I was expecting from the doctor. 

 

Iris L. 

 

 


Lane Simonian
Posted: Thursday, May 10, 2012 2:59 PM
Joined: 12/12/2011
Posts: 5089


I think you have it figured out correctly, Iris.  Here's one of the articles that I have read linking lupus to vascular dementia. 

 

So what are the risk factors involved for vascular dementia? Individuals who develop vascular dementia have a history of one or more of the following conditions: heart attacks, previous strokes, TIAs', high blood pressure, diabetes, high cholesterol, or blood vessel damage from autoimmune disorder such as Lupus. (website Dementia Guide: Vascular Dementia).

 

I am not 100 percent sure this is the cause of your memory loss but it seems highly likely to me.  Unfortunately, I don't know about stem cell therapy--it seems like a promising treatment for many diseases, but I am not sure how far along they are with it or how successful it has been in initial clinical trials.  In any case, I think you can keep things in check by what you are already doing.