Memory Loss

September 14, 2000

, .... now what was I going to say????.....

Seriously, I have found (and my hubby has pointed out to me as well) my

concentration has decreased dramatically lately and is really terrible

during a flare or when the pain level is highest. There dosen't seem to be

any diffference pre or while on MTX. ( although that's hard to recall

:-)

My considered opinion (when I can remember it) is that no matter how

hard I try to focus on other things, when I am hurting badly it occupies so

much of miy mind that I have a hard time focusing on other things enough to

retain it at all. When I'm feeling realatively well, it does not seem to be

(as much) of a problem. I am 51, taking MTX, folic acid, oruvail (off

VIOXX d/t elevated BP) , synthroid, premarin, tylenol pm occasionally,

occasionally flexaril @ night , dovenex and cutavate oint for P. (I keep a

list so nothing gets forgotten . :-)

I also had a terrible time with my memory for a while before finding

that my thyroid had stopped functioning . It improved greatly once the

synthroid had returned those level to an acceptable range. This happened

about 3 years after being treated for extreme over active thyroid

attributed to Hashimoto's Thyroiditis. ( another auto immune nasty).......

Has your's been tested lately?

Lastly, I really believe that depression is an inevitable companion to

conditions like PA, especially during high levels of pain, and that has a

real impact on memory.

LOL- I can't remeber a thing I wrote. hope it was something worthwhile cause

it sure was wordy.

in Wisconsin ( I hope) :-)

September 14, 2000

In a message dated 9/14/00 2:01:25 PM Eastern Daylight Time, clonan@...

writes:

<< My considered opinion (when I can remember it) is that no matter how

hard I try to focus on other things, when I am hurting badly it occupies so

much of miy mind that I have a hard time focusing on other things enough to

retain it at all. >>

Hi : I agree with you about the pain being such a focus. I also find

that towards the end of the day at work I become a rambling idiot. Around

3:00 I just try to stay away from my staff so they won't see how idiotic I

feel. I manage Medical/Optical Billing so I am able to hide myself away in

my office..which is good. But I also have to force myself to " leave a

trail " ...notes, etc. about things I've done or need to do at work. I feel

like I am " pretending " to be normal all day long! Then today, I find that I

sent my husband an email while he was out of town...updating him on things

tha were happening while he was gone...well, he's back tonight & I am

repeating what I wrote...I did not believe him when he said I had emailed it

all to him!

And tomorrow I won't remember that I said all of this!! LOL...

On another subject, the MTX is giving me just horrible intestinal problems.

I was increased to 17.5 mg (oral) this week (Tues) and things really hit me

today at work. The dr. put me on Pepcid...and I am wondering if I should

explore doing the shots...does anyone have any input on that...are the shots

any better/different as far as the side affects go? I don't know.. this is

really awful...and it seems to be getting more severe rather than better!

(week #6)

Moderator note: I think I started doing the injections once I hit 15 mg/wk.

The injections made a HUGE difference, and they are REALLY easy to do. I did it

once, had the hang of it and never looked back. I would definitely bring it up

with your rheumy! Patty PHDRWD@...

September 15, 2000

You wrote:

>On another subject, the MTX is giving me just horrible intestinal problems.

>I was increased to 17.5 mg (oral) this week (Tues) and things really hit me

>today at work. The dr. put me on Pepcid...and I am wondering if I should

>explore doing the shots...does anyone have any input on that...are the

shots

>any better/different as far as the side affects go?

Mark has had a much better result with his MTX injections. He has far less

side effects. The rheumy explained that the amount of food and types of

food in your system can also effect the absorption rate and effectiveness,

so your dose ends up varying each week when taken orally.

Mark does take 25mg weekly, but I know he far prefers the minor pain of a

shot to all the upset tummy stuff. He gets a little intestinal trouble the

day of his injection, but it's usually gone quickly. He has also noticed

that his side effects can vary depending upon where he injects himself.

I hope that helps!

Laurie

>

>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

>We are currently discussing new chat times. moderates a chat

on arthritis at

>www.about.com on Thursday evenings, so check that

>out in the meantime! E mail at RA@... for details.

>

June 21, 2002

I just have a thought to share about memory loss. I've been officially

diagnosed with PA for 2 years now. The trauma of 2 car wrecks in 6 months

and the wildly out-of-control flares I suffered in the wake of all that has

left me with a very noticeable 2 year hole in my life.

The haze began to clear for me about Thanksgiving of last year. I had a

fabulous vacation over Christmas and new years... really got to relax and

sleep and be as stress-free as possible.. it's made a huge difference... It

feels like I finally got out in front of this mess instead of always playing

catch-up in each flare. I finally bought a new calendar for 2002 in January

and went looking for my old one to transfer family birthdays etc.... The

shocking thing to me was the last calendar I could find with anything written

in it was 1999!! Good God, I have lost 2 years... 2 years of just barely

getting through the day... trying to sleep to get up and do it again. It was

awful....

IT'S NOT THAT BAD ANYMORE... I really want to share that I can see a huge

difference. I wouldn't have believed any of you if you told me this was

possible... but I really do feel better... I really can see that as a flare

with a begin and an end... ok a two year long flare... but this year I've had

only 2 bad months - really only about 6 bad weeks..... I can live with that.

I guess what I want to share is that I thought my mind was gone for good,

that I would never think clearly again... I use my mind to work too... so I

know that fear. I have established two new programs on my job this year so

far... lots of lists and a notebook I carry at all times.. but so far, It's

working! Take heart... I hope you all hear from your minds soon and you can

say they are back! Even if you have to still track them with pen and

paper...

June 21, 2002

Congratulations! I know what it feels like to -- it seems like suddenly,

even though it isn't -- stop hurting all the time. It is something we can

all look forward to, sometime. May you enjoy many happy, relatively

pain-free years. -- Jan O', Alaska

Re: [ ] Memory Loss

> The haze began to clear for me about Thanksgiving of last year. I had a

> fabulous vacation over Christmas and new years... really got to relax and

> sleep and be as stress-free as possible.. it's made a huge difference...

It

> feels like I finally got out in front of this mess instead of always

playing

> catch-up in each flare. I finally bought a new calendar for 2002 in

January

> and went looking for my old one to transfer family birthdays etc.... The

> shocking thing to me was the last calendar I could find with anything

written

> in it was 1999!! Good God, I have lost 2 years... 2 years of just barely

> getting through the day... trying to sleep to get up and do it again. It

was

> awful....

>

> IT'S NOT THAT BAD ANYMORE... I really want to share that I can see a huge

> difference. I wouldn't have believed any of you if you told me this was

> possible... but I really do feel better... I really can see that as a

flare

> with a begin and an end... ok a two year long flare... but this year I've

had

> only 2 bad months - really only about 6 bad weeks..... I can live with

that.

>

> I guess what I want to share is that I thought my mind was gone for good,

> that I would never think clearly again... I use my mind to work too... so

I

> know that fear. I have established two new programs on my job this year

so

> far... lots of lists and a notebook I carry at all times.. but so far,

It's

> working! Take heart... I hope you all hear from your minds soon and you

can

> say they are back! Even if you have to still track them with pen and

> paper...

>

June 23, 2002

Hi -

yes, the memory loss scares me too!

In VA teachers have to recertify every 5 years. Had everything I

needed, but had completely forgotten about it. Ran across from

paperwork from 5 years ago and that reminded me. Otherwise -- ???

hopefully someone 'higher up' would have reminded me, but gee -- does

that make me look incompetent or what?

Debby

> ,

> You have hit on the one thing that drives me crazy.....memory

> loss. I used to be very good at remembering almost everything that

> either happened or was said. Now I keep asking my husband " what

was

> I saying or What was I doing? " He laughs, but it is real

> frustrating. I'll tell him, I know you just told me where were

going

> (or whatever), but where are we going? I feel almost stupid. The

> worst is when I'm trying to listen to someone talk and I look at

> their lips, but it's like I can't catch what they are saying.

> (That's really strange) But I can tell all of this is the worst

when

> I totally exhausted. Most of the time I try to laugh it off, but

it

> scares me.

July 12, 2002

> Hi all,

>

> My daughter Jenna is 4. Just before she turned 2 we got her a train

> she could ride on an oval track. She loved it! When she was 2 1/2

> she woke up one morning and seemed to have forgotten how to ride the

> train. We put the train away and a few months later taught her how

> to ride it again.

>

> After nearly a year we put the train out again today and Jenna once

> again has no memory of it and seems really baffled by holding the

> button down to propel the train. Her 3 year old sister (NT)

> remembered it and how to ride it just fine.

>

> This is a pattern w/ her. We rotate toys and frequently she

> will " forget " how to use a toy or what it does. Is this a mercury

> side effect?

>

> Valeri

I have most definatly read that memory loss is an effect of

mercury poisoning. I do NOT know if that is what is at the

root of Jenna's difficulties with trains, but it would be

a possibility.

Here is a quote of Andy's book, from http://www.noamalgam.com :

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Intelligence gradually deteriorates. Previously bright persons become

dull and slow in thinking. They suffer from a progressive decline

specifically affecting short term memory as well as the faculties for

logical reasoning. Thus their ability to do things like balance the

checkbook,

do math, or play chess suffers. They lose the ability to

concentrate. Memory problems may be more from distractability and

inability to

concentrate and pay enough attention to get things INTO their memory

than an actual failure to remember things (thus they may complain of

memory problems but do well on memory tests). They cease being

motivated towards their work or other tasks. Thoughts become heavy,

repetitive and pedantic. Creative thinking becomes progressively more

difficult, eventually becoming impossible. They become unable to

select

the right words to convey their meaning, and make stylistic and

grammatical errors. Their ability to express themselves declines

progressively.

There is a distinctive cognitive symptom of being unable to think

clearly without great effort. The best description for people who

have not

experienced it is of a hangover without pain. People who have

experienced it will recognize the term " brain fog " as entirely

descriptive.

January 8, 2008

I would like to chime in on the problem also. While I do associate

some memory loss to getting older (68). I also believe that I am

concentrating on the at hand tasks that I completely block out

anything else going on around me. My wife will start to tell me

something I will stop her and ask her to start over again because she

did not have my full attention. Yes, I think Gleevec is part of the

problem but not all. Since I have been on a Gleevec vacation since

the end of May the fuzzies have gone away but I am not remembering

any better. I have a complete paragraph ready to speak and by the

time I get the first sentence out, I have completely lost my train of

thought. So I feel like there are many factors at work and am just

trying to live with it and not let the flusteration get to me.

H.

dxd 2/03

400Mg Gleevec 3/03

PCRU 11/04

Q-PCR undetectable 11/05

Gleevec induced Iron Defeiceny Anemia 11/06

Gleevec Vacation 5/07

Zero Club #350

January 9, 2008

Hi ,

Can you bring us up to date on your Gleevec vacation? Are you still at PCRU?

How often to you do a PCR test? Any plans of ending the vacation? Does Dr.

K. have other patients who are taking a break?

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

dickie_64012

Sent: January 8, 2008 5:56 PM

Subject: [ ] Memory Loss