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Neurologist visit tomorrow 12/29/11
Iris L.
Posted: Wednesday, December 28, 2011 1:31 PM
Joined: 12/15/2011
Posts: 16143


When I completed my testing in December 2008 the neurologist (who regularly sees Alzheimer's patients) diagnosed me as cognitive impairment nos due to chronic fatigue syndrome and depression.  He referred me to an infectious disease specialist  and eventually prescribed Exelon patch.  A geriatrician added Namenda.

Since that time I have been diagnosed as having sleep apnea.  With CPAP treatment the debilitating deep chronic fatigue I suffered from for over two decades has miracuously disappeared.  I've had four courses of anti-depressants  since 2008.  I've been with psychologists and other mental health worlers. I posted about my experience with deep depression on the other board.  I've also developed my own nutritional supplementation program.

 

 

 

The problem which is continuing is my blood pressure--it's not where I want it to be.  Also I'm pretty sure my A1C will be elevated this time., meaning that diabetes is more likely to be in my medical picture.

All of the above is what I am going to discuss with the neuorologist tomorrow.   The last time I saw him he wanted to repeat the neuropsychologic testing.  I thought it was too soo, only 1 1/2 years.

I'll let you know the results of the visit.

Iris L.


Mimi S.
Posted: Wednesday, December 28, 2011 2:51 PM
Joined: 11/29/2011
Posts: 7035


Iris, I hope you have a satisfactory talk with your neurologist. We will await the results.
Lisa428
Posted: Wednesday, December 28, 2011 8:57 PM
Joined: 12/5/2011
Posts: 795


Iris,

Hope you have a good visit.

Please, let us know how it goes!

Good Luck!

Peace and hope,

Lisa


Ttom
Posted: Thursday, December 29, 2011 12:15 PM
Joined: 11/29/2011
Posts: 182


Just setting here waiting to hear the news. Good Luck Iris!
ffwife
Posted: Friday, December 30, 2011 10:26 AM

Iris,

 

Waiting and hoping for good news

 

 


Iris L.
Posted: Friday, December 30, 2011 9:59 PM
Joined: 12/15/2011
Posts: 16143


I took everyone's suggestion and wrote down my complaints for the neurologist to read before he saw me.  He seemed surprised that I had so many complaints, but then told me that Exelon only works for 1 1/2 years.   

 

After much discussion this is the plan: 

1.  Begin Aricept 5 mg daily in addition to Exelon patch and Namenda. 

2.  Repeat neuropsychological testing from October 2008. 

3.  check vitamin D level 

4.  Consider a clinical trial after 2-3 months of Aricept treatment. 

5.  Visit www.positscience.com for cognitive stimulation.

  6.  Axona is not beneficial for people who are APOe4 positive.   

 

Iris L. 


Tonya2
Posted: Saturday, December 31, 2011 4:15 AM
Joined: 12/8/2011
Posts: 33


Thanks for sharing Iris....I hope the changes will be beneficial for you...

Best wishes....


JAB
Posted: Saturday, December 31, 2011 9:38 AM
Joined: 11/30/2011
Posts: 740


Where did he get the idea Exelon only works for 1-1/2 years?  I've read voluminously on the subject of cholinesterase inhibitors, and I have never seen a study that came to that conclusion.   

  

Adding Aricept on top of Exelon may cause a bunch of adverse side effects.  Has he discussed this with you? 

  

Axona IS beneficial to Alzheimer's patients who carry the APOE4 allele ... it simply is not AS beneficial (at the same dose) as it is for those who do not carry the allele. 

  

You know I'm all in favor of participating in clinical trials.  However, one has to meet the eligibility requirements to be accepted into a trial.  Is he talking about a clinical trial for a new drug to treat lupus?   


Iris L.
Posted: Saturday, December 31, 2011 3:29 PM
Joined: 12/15/2011
Posts: 16143


JAB wrote:

Where did he get the idea Exelon only works for 1-1/2 years?  I've read voluminously on the subject of cholinesterase inhibitors, and I have never seen a study that came to that conclusion.   

  

Adding Aricept on top of Exelon may cause a bunch of adverse side effects.  Has he discussed this with you? 

  

Axona IS beneficial to Alzheimer's patients who carry the APOE4 allele ... it simply is not AS beneficial (at the same dose) as it is for those who do not carry the allele. 

  

You know I'm all in favor of participating in clinical trials.  However, one has to meet the eligibility requirements to be accepted into a trial.  Is he talking about a clinical trial for a new drug to treat lupus?   

 

 

 

Response: 

 

I asked specifically about adding Aricept to Exelon patch--he said adding 5 mg would be okay.  He didn't say anything about side effects. 

 

 

 

 He said specifically that Axona and coconut oil is HARMFUL to those who carry the APOe4 gene.  He also said the Bap? clinical trial is not useful for those who carry the APOe4 gene. 

 

He did not specifiy which clinical trial.  He asked me to call a clinical trial company here locally.  When I called, the woman I spoke with told me I was not eligible for any trials they are running now, but that she had a Stage 1 trial coming up in a few months.  She did not tell me what it was about.  She said she would call be in two to three months, after I had been on the Aricept.   

 

I'm not that interested in clinical trials because I feel I've been a guinea pig long enough in these past five years since May 2007 when I first began complaining of difficulty functioning.  I'm having enough difficulty as it is.  I'm not about to get on a placebo or some unknown experimental new medication with questionable results.   

 

I just went through two trials of known antidepressant medications Savella and Cymbalta) which I believe wasted much of my time and put me farther back cognitively.  I'm still suffering from the effects of Cymbalta which I stopped almost 3 months ago (October 9). 

 

Lupus blood tests have been in the normal range for several years.  Three rheumatologists have told me there is no need for additional lupus treatment at this time. 

 

If I had the old board I could search for some information I'm looking for.  Unfortunately I must search in a different location now. 

 

 

 

Iris L 


JAB
Posted: Sunday, January 1, 2012 12:46 PM
Joined: 11/30/2011
Posts: 740


Well, Iris, I've read everything I can get my hands on about Axona and the underlying ketone body therapy mechanisms, and there's absolutely no reason to believe it would be harmful to patients carrying APOE4.  And the clinical trial data indicate it helps stabilize Alzheimer's symptoms in patients carrying that allele. 

 

I don't think coconut oil is a good idea -- for anyone -- because (a) it contains very little of the compound that is thought to be helpful and (b) it contains very high levels of "unhealthy" saturated fats.

 

If the neuro is talking about a clinical trial for a treatment to help with your cognitive dysfunction, rather than specifically to treat your lupus ... I don't think you're going to be eligible for any trial.  It's extremely rare that they'll accept a patient with a "dementia NOS" diagnosis, let alone "cognitive dysfunction NOS".

 

In fact, it's rare for there to be trials that don't require a clear-cut diagnosis of Alzheimer's for eligibility.  The only other ones I've seen have required some sort of FTD diagnosis, and those are few and far between.

 

And a serious co-morbidity such as lupus would disqualify you even if you had a diagnosis of Alzheimer's.


Iris L.
Posted: Sunday, January 1, 2012 4:17 PM
Joined: 12/15/2011
Posts: 16143


Thank you for the recap about the Axona, JAB.  After I complete my new neuropsychological testing I'll see if the neurologist wants to change my diagnosis, and will consider Axona again.

Iris L.


ffwife
Posted: Sunday, January 1, 2012 4:55 PM
Holy Moly, I tried some of those games on the site your DR gave you....they gave me a run for my money! But good exercise.
Lisa428
Posted: Monday, January 2, 2012 5:25 PM
Joined: 12/5/2011
Posts: 795


Iris,

 

I'm not sure if I am understanding things correctly.

 

Does your doctor want to add Aricept in addition to the Exelon patch??

 

Are you on Namanda??

 

I've been on the Combination of the Exelon patch, Namenda and Cerefolin for about 3.5 years.  So far, so good.  I'm also, on generic prozac and generic depacote (for anger).

 

Since Aricept and Exelon are the same type of drugs, they could give you some weird side effects.

 

Please, take care of yourself.

 

Good luck in your neuropsychologicals.

 

Please, keep us posted.

 

Peace.

 


Geegee
Posted: Tuesday, January 3, 2012 10:49 AM
Joined: 11/29/2011
Posts: 514


Dear iris,

I've been reading to keep up with your doctor visit.  Interesting feedback.  I will 


continue to read and wish you the best with the transition.  I know you don't want any more complications.  you do not need more stress.


Your friends here will watch after you!  



Iris L.
Posted: Tuesday, January 3, 2012 12:10 PM
Joined: 12/15/2011
Posts: 16143


FFwife, I still have not looked around that posit site yet. 

 

 

 

 

 

Lisa, I have been on Exelon patch and Namenda for 2 1/2 years.  The neurologist wants me to ADD Aricept to these two..  I'm going to wait until after the neuropsych testing.  I'm afraid if I begin Aricept, I won't be able to stop without a massive decline. 

 

 

 

Geegee, thanks for your support.  No, I don't need any more stress or side effects.  I'm still trying to overcome the bad side effects from four months of Cymbalta. 

 

 

 

Iris L. 


Geegee
Posted: Thursday, January 5, 2012 11:46 AM
Joined: 11/29/2011
Posts: 514


Iris, I'm sorry you had some side effects from taking Cymbalta.  I tried it a few years ago but, of course, I can't remember what for... or what problems it caused.    LOL    Hope side effects have subsided.  


Aricept was a problem for me.  It was NOT compatible with my IBS.  The only benefit was that it caused me to lose some weight.  It jump started me to lose what I needed to.  


Now that I'm on Exelon patch instead of Aricept, all is good.  Well, it's as good as it gets with AD!  


Just watch for any problems adding Aricept.