Memory problems

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Regular Member

Date Joined Jan 2007
Total Posts : 135
   Posted 6/5/2007 5:13 PM (GMT -6)   
Lately I have been forgeting things. I mean really forgetting. And I have been making mistakes at work. It's terrible and scary. I keep thinking it's just stress but then I have read some posts that Lupus can cause CNS problems. What does your rheumy do to test for CNS Lupus problems? Can he figure out if it's Lupus or just stress? Should I tell my rheumy on my next appoinment about how forgetful I have been? Or am I just making to big of a deal with it? My husband will say something about an event we are going to and I think this is the first time he has told me. When actually he says he already told me. And I have no idea or even a hint of a memory of it. I don't get upset because I am in shock that I can't remember. I have to keep a detailed calendar and look at it 3-4 times a day. I make detailed lists of things to do and people I have talked to. It's frustrating. Please help.
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, Flonase.

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 6/5/2007 5:27 PM (GMT -6)   
i get that sometimes, but mine is just the lupus fog, like going to the store and forgetting why you went, or getting up and going into a room and forgetting why you got and what you are looking for. for me its even worse when i am high levels of pred like i am now, cuz i get even more scatterbrained.
Hugs and prayers,
diagnosed in May '95 with lupus nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D

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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/5/2007 6:38 PM (GMT -6)   
Kitty, it can be hard to tell whether your symptoms are caused by CNS problems or if it's lupus brain fog. Probably the best thing to do is talk to your rheumy about it and see if he thinks you might need any testing. I think it's a neurologist who does testing for CNS stuff. The lupus brain fog can be terrible. I have been like you and have had people tell me about something or an event and I'm sure it's the first time I've heard about when it really isn't. I've gotten mad at my husband a few times when he's getting ready for a business trip or he's got a meeting after work and I think he hasn't told me about it, but then he reminds me of the conversations we've had about these things - the poor guy. So now we keep a very detailed calendar on the refridgerator. It's not like me at all and it can be scary.

Please do mention this to your doctor and get his opinion about it. Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 6/5/2007 8:06 PM (GMT -6)   
Yes, please mention your brain malfunctions to your doctor. Most rheumies will want to do an MRI or have you see someone for neurological testing. My brain involvement had gotten bad enough that I closed my business, quiet working at all, and was almost afraid to drive, as I'd forget how to put two trains of thought together. It was *more* than a little frightening, I assure you.

First we tried Imuran, which did nothing for my brain, then Cellcept --- the Cellcept has given me back my brain!!! It has truly been my miracle drug. I wasn't sure I'd even be able to live alone too much longer, as even grocery shopping became such a huge mental ordeal.

Also, I want to say that I no longer believe "just stress" exists once we've had an actual lupus flare. Stress, of any size, produces a lupus response of some type -- short term, maybe, but the lupus is definitely a player. The stress doesn't occur without the lupus piping in with some comment!

The sooner you mention this stuff to your doctor the better off you are. My dr didn't do much at first, but since I'd talked about it he could see how it was progressing and making me more and more frustrated, miserable, and frightened. Once he was able to see a measurable progression, he was much more comfortable taking action. A 'little' can be 'normal' brain fog, but a lot......

Good luck, I know how you're feeling,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
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Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

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Post Edited (Lynnwood) : 6/5/2007 7:09:45 PM (GMT-6)

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/5/2007 10:07 PM (GMT -6)   
Hi Kitty, yes a lot of us can understand what you are going through. It's frustrating and quite scarey. I have told people that I am around alot to not be offended if I don't remember conversations that we had. Even with nudging to get me to remember some things are a total blank. I must admit I have been feeling pretty good this past week and my brain seems to be pretty clear. It's like what Lynn said stress of any size causes a lupus effect. Since I havn't felt bad I havn't felt stress, so I have felt brain fog. I don't take any meds for mine but I havn't had an mri done either.
As far as should you tell your doctor, yes yes and yes. I think if you have a hang nail you sould at least right it down and tell your doctor. If it's a new symptom than yes you need to let them know.
Good luck
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 6/5/2007 10:59 PM (GMT -6)   
I am right there with you wife would get upset with me when I told her that "I had not heard that". So, she would get up set...Now, we have came to terms with each other...She will tell me something more than once, I will not get mad with her. If, I say I don't remeber something she will not get up-set with me. It's funny now, my good days are that I can remeber all 6 numbers of my securID at work....

Sometimes we just have to luagh....
Enjoy what you can today and leave the rest for another day.

Regular Member

Date Joined Jan 2007
Total Posts : 135
   Posted 6/7/2007 9:51 PM (GMT -6)   
Thankyou everyone for the great advice!!!!
I finally got an appointment in a couple of weeks to see my Rheumy. I'll let him know about the memory problems that come and go. It's just nice to know I'm not the only one going crazy with this memory thing.
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, Flonase.

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 6/8/2007 10:57 AM (GMT -6)   


I'm coming in a little late on this subject.  I have been diagnosed with Lupus CNS and experienced memory loss.  However, my loss also included getting lost in familiar places, not knowing who my children were, speech and motor problems as well as the short-term memory loss you described.  I had been diagnosed with Dementia, and later Alzheimer's - I have been getting much better and it is now 2 or 3 years since I was diagnosed, so I don't think Alzheimer's is the correct diagnosis.  If your short-term memory has been a problem for a while, then it would be good to get a neuropsych test done and get a referral to a neurologist.  This may help distinguish between the lupus fog and perhaps a more complicated neurological problem.  With my CNS I have had a bevy of neurological problems aside from, and leading up to, the dementia.  You may want to note any sensory problems, muscle usage difficulties, meningitis like symptoms, migraines, eye problems, blood clotting, etc.  I never realized all these things added up to a CNS disease.  The neurologist knew immediately it was Lupus CNS.  Back when, they did an MRA to see if there were blood clots or vascular problems.  MRI to see if there were structural problems.  Both turned out negative.  The neuropsych exam was the only evidence that I sustained some type of organic brain dysfunction.  They also can do bloodwork to see if you have the bio-marker(s) for CNS Lupus.  CNS Lupus is very rare and extremely hard to diagnosis from what I am told.   

Hopefully your Rheumy can sort this all out for you.  I am not sure what type of Lupus you predominately have.  Sometimes this makes a difference.  Memory loss is frustrating, but it sounds like you are handling it well.  I have notes everywhere and sometimes loose those too, but I get by.  Hopefully, it is the Lupus fog which will come and go.  I wish the best for you - Kristin

tink 2
Regular Member

Date Joined Jan 2007
Total Posts : 371
   Posted 6/8/2007 5:28 PM (GMT -6)   
You can count me in on this subjest. What was it anyway??
Lupus since 2005, MCT since 2005 polymysoitis since 2005,Arthritis since2005 sjogren's syndrome since 2005, vertigo since 2006,migrains since 2006, diabetes since 2006, Depression since 2004. who would not be with all of this.
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
                   Have a great Lupie Day Denise 

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