Memory problems--so scared!!

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Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 11/14/2013 11:46 AM (GMT -6)   
My memory is causing problems with driving. I could not remember where the headlight switch in the car was when I was driving home the other night. Then I could not remember where we keep the dishes in the kitchen. This is all happening while I have been sick on and off with extreme fatigue and muscle aches, headache,weakness.
My doctors are checking a Spinal Tap for results but I am scared because I am getting worse!
Do any of you have the same things happening??

Glass 1/2 full
New Member

Date Joined Nov 2013
Total Posts : 1
   Posted 11/14/2013 12:00 PM (GMT -6)   
I've recently had similar. I can't remember simple commands on the computer, like how to check spelling or make a letter a capitol letter. I am organized to an extreme and yet my world is spinning in chaos, because I forget to bring something I needed, forget where I put things etc. so not like me. With that said, I too have been experiencing an increase in pain and fatigue and STRESS. I think the flare up itself causes stress and I'm hoping it's the stress and poor sleep contributing to this new fog I live in. No new meds... same regime for a few years now. God bless you on your journey.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/14/2013 12:36 PM (GMT -6)   
I have spells of that.

A few weeks ago I made a doctor's appointment. As I was talking to the nurse I wrote down the time on the calendar and repeated it back to her. Yesterday I showed up for the appointment only to find out the appointment is today.

I forget things very quickly too. I carry a gps in my car in case I get lost.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 11/14/2013 8:41 PM (GMT -6)   
Sounds like you've got a bad case of fog going on. Now I know that they are looking into MS and possible CNS on you. I do know that sometimes when having a bad flare this type of stuff happens.

If it's at all possible, I'd recommend that you stay home and rest totally. If you need to go somewhere, have someone take you. At least until you hear back from your Dr's as to what they think is going on.

It's possible that your flare is really and maybe you need some high dose steroids to clear it up. I'm not a Dr and I'm not recommending that, but from my own experience, when I'm in a terrible flare usually high dose steroids is the only thing that pulls me out of it. I'm talking like 80mg or high or pred daily for a couple of week for me.

Try to rest as much as you can and lessen the amount of stress in your life. I know that's easier said than done, but being stressed and overly tired is a bad combination for a flare up.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 11/14/2013 10:08 PM (GMT -6)   
That is just what I was thinking, that this is all a big flare--not sure what of yet! But I am worried that my memory will just keep going downhill. Do you think if I start some medicine( whatever that would be) that I will feel better physically and have a more alert mind. I am so scared that it is just gone. (I am already not going to drive anywhere until I know what this is)

Forum Moderator

Date Joined May 2005
Total Posts : 7720
   Posted 11/14/2013 10:17 PM (GMT -6)   
My brain function did go downhill fairly early after my diagnosis. But Cellcept was my 'miracle drug' that brought things back to normal, including my memory. I haven't really noticed that I have forgotten things forever (but would I notice?) and my cognitive function is much closer to normal now.

If things have changed rapidly in this area please schedule with your Rhuemy and get the issue addressed. For me this was a big flare that involved my brain and didn't cause too many other symptoms. I did spend a little over a year not driving as I just wasn't safe.

Hang in there, and visit the doc!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 11/14/2013 11:04 PM (GMT -6)   
I will be calling the Neurologist tomorrow to get the results of the Spinal Tap. And I will be sure to tell

them about the memory problems and how fast this is going. It's so scary! I hope they realize how

serious this is. I almost never go anywhere and I don't feel safe walking around as I don't know if I am

strong enough to be up and about.

New Member

Date Joined Nov 2013
Total Posts : 13
   Posted 11/15/2013 7:07 PM (GMT -6)   
Don't be afraid i have the same problems & i forget things while
i am in the car just like you and i am also told that i have no short memory. it is tough at work when the boss says we talked
about it reply is now just give me a minute it will
come to me.and make them laugh. Please remember that God
will not give us any more than we can handle. let me know how
your results come out and remember that this happens when
lupus is nasty. & you are having a flare up or in a fog.
They did a brain scan on me because I thought i lost it.
you are in my prayers and talk to you soon

New Member

Date Joined Nov 2013
Total Posts : 12
   Posted 11/18/2013 4:02 PM (GMT -6)   
I feel like I've been living under a rock for until recently I have become aware of lupus fog. It's real, it's why I have problems saying how I feel, getting the right words to come out of my mouth, I can think them but can't seem to say them. I can write them, but can't say them. Forgetting things, seems like thats been a forever thing for me. It's getting worse, the other day I could not remember how to turn on the head lights on in the car, "thank you God" it wasn't long before I rememberd. My long term memory seems to be ok, but my short term memory isn't. I am now calling it what it is lupus fog, where as before I was thinking it was old age. Yet I now know lupus fog arrivied right along with lupus in 1997 as one of his mean side effects. I now believe I've had lupus for a long time before I was diagnosed.

Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 11/18/2013 5:54 PM (GMT -6)   
I talked to the Neurology nurse about my Spinal Tap results and she said the white spots that were seen on my
Brain Scan are a 'demyelinating disease' similar to MS. So my SLE is in remission but now I have this.
I will see the Neurologist in a few days and he can tell me more. I wonder if SLE caused this or if the meds I took did
it. Just curious... The doctor said that MS and SLE are cousins!!--what a family.

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 11/19/2013 6:54 PM (GMT -6)   
sueg - so sorry you have something else to contend with. Your questions are good ones - please share what you find out from the neurologist. I have not heard SLE and MS being being referred to as "cousins", though I know they are both autoimmune disorders. I actually have a cousin with MS and he does have some memory issues.

JJ1226 - I feel a lot like you do. Some days are scarier than others. I never quite know where the line is in terms of needing to mention it to my rheumy - but I never seem to remember to bring it up at an appt. You said:" It's real, it's why I have problems saying how I feel, getting the right words to come out of my mouth, I can think them but can't seem to say them. I can write them, but can't say them."
Boy, can I relate!!!

New Member

Date Joined Nov 2013
Total Posts : 12
   Posted 11/20/2013 12:02 AM (GMT -6)   
sueg, I found if I write down my questions before I go to the doctor apt and sometimes I write their answers down too. I thought I might be the only one that has problems with speaking out loud what I'm thinking. Thank you for telling me, not happy that you have the same problem, but at least we can relate. Not everyone understands this problem and it is a big problem.

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