Memory Problems/Loss

[Guest guest]

amy i have not had the problem as bad as you but it definitely needs to be

mentioned to your dr it could be one of your meds

>Hi group,

>

>My name is Amy. Im 32 and live in south Louisiana right on the Gulf. Im having

some memory symptoms that Ive never heard anyone else talk about in the years

that Ive dealt with Stills Disease.

>

>Im very embarrassed in dealing with this and havent even told my doctor about

this yet.

>For about a year now my memory seems to be getting worse and worse. At first, I

had simple memory issues that most of us have at times (losing my train of

thought, or forgetting why I walked into a room to get something), but for

months now its become very different. I have conversations with people that I

dont recall having at all. I do things or go places that I dont remember doing

at all. I'll go to the bank to pay a bill only to find out that Im 2 months

behind because I truly think Ive paid the bill and remember doing it...but its a

memory from 2 months earlier.

>I do take medications off and on that affect memory (like predisone), but the

medications are NOT meds that I take every day or for any long length of time at

all. However, the memory problems do not go away and seem to be getting worse.

>

>Is anyone else out there struggling with this problem? Please help if you can.

>

>Amy

>

[Guest guest]

Hi Amy,

I am 39 and I have just recovered from a flare where I had the symptoms you

speak of. I had trouble thinking of the names of common items, for example I

would call a tooth brush " that thing you clean your teeth with " . I remember one

time I was at a dinner party with a bunch of ladies that I have known for a long

time and , suddenly I could not remember anyone's name. Another time I drove

across town and forgot where or why I was out and just turned around and went

home. It is extremely scary. At the time I was not on any medication, except

blood pressure medication that I have been on for years. I went to the emergency

room several times and had visits with the rheumatalogist, and neurologist. They

never could figure it out. They said it was possible episodes of brain

inflammation. I can tell you that at the same time I did have a lot of

inflammation and water gain. It was not uncommon to change 15lbs. in one day.

They did an echocardiogram and found that I had pericarditis and a pleural

effusion.

You should definitely talk to your doctor about it. Thankfully mine just

cleared up on its on. Good luck and keep us posted.

Tracie in D.C.

To: Stillsdisease

From: amyalowery@...

Date: Tue, 17 May 2011 19:26:33 +0000

Subject: Memory Problems/Loss

Hi group,

My name is Amy. Im 32 and live in south Louisiana right on the Gulf. Im having

some memory symptoms that Ive never heard anyone else talk about in the years

that Ive dealt with Stills Disease.

Im very embarrassed in dealing with this and havent even told my doctor about

this yet.

For about a year now my memory seems to be getting worse and worse. At first, I

had simple memory issues that most of us have at times (losing my train of

thought, or forgetting why I walked into a room to get something), but for

months now its become very different. I have conversations with people that I

dont recall having at all. I do things or go places that I dont remember doing

at all. I'll go to the bank to pay a bill only to find out that Im 2 months

behind because I truly think Ive paid the bill and remember doing it...but its a

memory from 2 months earlier.

I do take medications off and on that affect memory (like predisone), but the

medications are NOT meds that I take every day or for any long length of time at

all. However, the memory problems do not go away and seem to be getting worse.

Is anyone else out there struggling with this problem? Please help if you can.

Amy

[Guest guest]

Hi Amy; Here; You are not alone Dear. I have had Stills for 3+ years now

(age 58) and have experanced the very same symptoms you talked about, and am

right now , it has not gone away totaly. My worst time was I went into a 5-6 day

walking blackout. I was living alone at the time and my daughter had been

calling me each day and after the eposode was over she told me all about the

phone calls. I than went into a Acute Stills Attach with Renal Failur and was

dieing. Just so happened my daughter came by on about the 6th day of the phone

calls, she felt something was wrong that night andwhen she got to my house (she

has keys)  I was passed out on my desk dieing. She got me to the ER and I was

in

a coma in ICU with life support. The doctors told my family I would not make it

through the night that I was dieing. I came out of it a week later and here I am

alive. The doctors said (after many questions) that I went into a state of

Amnesia for that two weeks. I today have a very bad memery and the doctors said

I could not live alone. My son moved in with me. I was a danger to myself. I

have not had a bad epasode of  Black Outs or Amnesia sence that one time. I do

still have a bad memery problem . It could be a systom of Stills or it could be

the med's you take. Unknown ???

Hope it goe's away for you and it could go away at any time and you will not

have a bad memery any more. Anything is possible and don't worry about it

because with Stills we never know where it will take us. I have had a symptom

for a long time and it will go away.

Don't worry, be happy, every little thing will be alright.

GARY

 

 

[Guest guest]

Amy

 I have not had that in years but when I was on a lot of meds be it every day or

once a week that was one thing I to dealt with and I found I had to write every

thing down and I do mean every thing . I used a day timer just as I used when I

worked a job before Bus driving were I had so many things going on every day.

now days some use cell phone calenders the same way and set alarms as reminders

others use dedicated thing like PDA's or small laptops thing like that . i do

know on a computer you can use a calender to set up things and then also set it

up to remind you of them . I do this for paying bills as I can never remember if

I sent off the rent check or not and I do so hate paying that late fee. just

some Ideas that may help. I know the string on the finger is useless as I never

could remember why I had a string on my finger so it never helped but the day

timer did and they can be picked up in any office supply store . I like them for

the choices be it a day by day or week or monthly its all up to you and I also

kept my phone numbers and addresses in it along with other info and well some

can almost be like a big wallet with places for cards and license things like

that . now add a calculator and you have a great grocery shopping tool also . I

just found them very workable and adaptive but as I said a lot of the

new electronics can also do it all now days also so that's my idea and how I use

things to help me so if you try any of this I hope you find it even better for

your self then I have for my self

hugs

 

 

 

The  Redneck  

Marty G     

 

In life there are few greater joys then the freedom of free will given to us By

God, the ability to love, the freedom to chose our friends, and the freedoms we

have been given and guaranteed by our founding fathers. Now if congress and the

President would just let us enjoy them instead of trying to interfere because of

there fear of them.

Marty G

5/11/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

Hi Amy (and all),

I don't know why no one has ever spoken about this before, but you sure

bring up a very valid symptom. I use to be a major multitasker. I would

have hundreds of issues/projects on my mind at one time in my job and at

home and I never, ever had problems with remembering words, or memory

issues, etc. That is until the dragon became active. I've had stills for 10

years (even though I didn't know it was stills for 3 of those years).

At first, I would get really mad at my husband, because he would say things,

like " you are getting really forgetful " and " boy, I wonder what the drugs

are doing to you " . or worse " I wonder if it's not the drugs, but whatever it

is that you have " . It really freaked me out (which is why it made me mad,

because I didn't accept it yet). I talked to my doctors about it all and

found out it wasn't the drugs, it was the disease and because I lived in the

North West when I first got sick, I really didn't go into a true remission

for a long time. Still haven't. I don't have the rash as much anymore, but

whenever I get an infection or run down, I get it. I almost always have a

daily fever and my memory gets worse as it gets higher.

Anyway - you aren't alone. also - fyi (I am 46)

Hugs to all,

Alli

[Guest guest]

Hi Amy,

You have received many answers on this subject. I want to add to this for only

one reason. Something I feel is left out, I don't know if anyone has had a CT

of their head or not, this is what my Doctor did. Well Actually, my

Rheumatologist sent me to see a Neurologist. I was experiencing not just memory

issues, but numbness in the hands, forearms and feet as well. After the first

MRI, it showed 2 white spots on my brain; a couple years later, 4 white spots; a

few years later, now 8 white spots. With the first two white spots, the

Neurologist was not so sure it was the disease attacking the brain; however, now

that there are much more and my memory is worsening, the Neurologist does think

it is the disease---mostly the short term memory is what I have problems with,

and only with certain things. I too have difficulty remembering what something

is called, have gotten lost in my home town while driving--though this did not

last long, I eventually remembered where I was. Mostly, I don't remember things

like asking my daughter to pick me up some milk and might ask her 5 times or so.

She used to get angry with me until we knew what was causing it. Naturally

being her Mother, she just assumed I was being a Witch. lol Anyway, I was

talking to Marty last night I think and about this and it does say in the

literature I've been researching lately at the NIH.gov site that SLE and Stills

can attack the brain. My Neurologist thinks so also. What I told Marty and

was that the VA, (as I got sick when active duty military), got me a new

home computer with a Quicken program to help with finances, then they got me

this little computer like thing called a Hp iPAQ to put my appointments and

other things in; I think this is what Marty was talking about that he has that

also helps with shopping. I just got mine delivered to my home yesterday and my

son-in-law and daughter is suppose to come hook them up today. The iPAQ can

also access the internet. To me, it is a mix between a cell phone and a

computer, I can forsee getting much use from this. Though it probably will not

help me with repeating things to my daughter. lol So, talk to your Doctor about

this, and those that have already, maybe ask your Doc to send you to a

Neurologist and see what he/she says.

In order to keep the confusion at bay, I want to add that people with MS have

white spots on the brain too and this is often used as a diagnosing tool in

deciding if someone has MS. The difference between MS and SLE and Stills is

that: with MS the white spots are found in a different area, the ventricles of

the brain, and with Stills and SLE they are found just kinda wherever it wants

to attack.

K

Im very embarrassed in dealing with this and havent even told my doctor about

this yet.

For about a year now my memory seems to be getting worse and worse. At first, I

had simple memory issues that most of us have at times (losing my train of

thought, or forgetting why I walked into a room to get something), but for

months now its become very different. I have conversations with people that I

dont recall having at all. I do things or go places that I dont remember doing

at all. I'll go to the bank to pay a bill only to find out that Im 2 months

behind because I truly think Ive paid the bill and remember doing it...but its a

memory from 2 months earlier.

Kathleen

Memory Problems/Loss

Hi group,

My name is Amy. Im 32 and live in south Louisiana right on the Gulf. Im having

some memory symptoms that Ive never heard anyone else talk about in the years

that Ive dealt with Stills Disease.

Im very embarrassed in dealing with this and havent even told my doctor about

this yet.

For about a year now my memory seems to be getting worse and worse. At first, I

had simple memory issues that most of us have at times (losing my train of

thought, or forgetting why I walked into a room to get something), but for

months now its become very different. I have conversations with people that I

dont recall having at all. I do things or go places that I dont remember doing

at all. I'll go to the bank to pay a bill only to find out that Im 2 months

behind because I truly think Ive paid the bill and remember doing it...but its a

memory from 2 months earlier.

I do take medications off and on that affect memory (like predisone), but the

medications are NOT meds that I take every day or for any long length of time at

all. However, the memory problems do not go away and seem to be getting worse.

Is anyone else out there struggling with this problem? Please help if you can.

Amy

[Guest guest]

Kathleen

 

 

I am so glad you posted to this after talking to you last night I could think of

none better then your self to respond so thank you . I have learned in life its

a lot easier to give advice if you have dealt with it your self and that is why

I thought of you right away

hugs

 

The  Redneck  

Marty G     

 

In life there are few greater joys then the freedom of free will given to us By

God, the ability to love, the freedom to chose our friends, and the freedoms we

have been given and guaranteed by our founding fathers. Now if congress and the

President would just let us enjoy them instead of trying to interfere because of

there fear of them.

Marty G

5/11/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info