Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
whylupus

Junior Member
Registered:
Posts: 22
 #1 
This past week, my forgetfulness, confusion, headaches etc has been horrible!
I think the hardest thing to except is the " mind changing issues,". I've felt horrible but kept trying to keep up with the basic household laundry, making the bed and getting dishes done!
I borrowed my husbands license to put his number into our tax forms. In my head, I gave them back?? We cannot find them! Hubby asked if we really drank the whole gallon of milk that he just bought last nite ? I replied, " I didn't drink any of it!" I later went to feed the cat and found the milk on top of the cat food and that is not in a refrigerator?? I kept that observation to myself! My husband came out of the kitchen carrying a folded pair of socks with a confused little smirk on his face, he said, " they were in the refrigerator??" I ran to the local 7 eleven and got out of the car and then needed the electronic key to lock it! Reached back in my purse? No key? I had just drove there and stepped out of the car! By now, I was in tears, frustrated and scared! Not that I couldnt find my key but that my mind was so messed up! Two men from my neighborhood helped me look for my key! Ten minutes later, one of them looked up and said, it's still in the ignition! I didn't go into the store. I got in my car and went home crying like crazy!
I walked in my house still crying! My husband came out of the bathroom with a towel wrapped around him to ask what was wrong? He had a toothbrush full of toothpaste and as I started to have my melt down explaining that there was something really wrong with my mind! The lupus is taking everything from me? My husband lets out a wheeeee and has a yuk face going on! A tooth brush in his mouth and a mouthful of tooth paste???
He said, oh my this isn't toothpaste??
I dried my tears as my husband went toward the bathroom to see what kind of toothpaste tasted like what was now in his mouth?
Ummm, turns out that, I put my monastat vaginal cream tube in the toothpaste holder and the toothpaste in my private belongings! Bahaha I'm so glad that I realized it before I tried to use my monistat cream tonight!! We both enjoyed the less serious side of my mind issues! My husband hugged me tight and, we both stood laughing happy tears! A little humor can go a long ways sometimes!!
On the serious side, I'm in a flair and have. Even since January! Will this memory stuff get better? I actually got lost again coming home? My home of twenty five years! I was trying to do my taxes and I couldn't remember my own birthday! I see people that I've known all my life but can't for the life of me remember their name? This happened before diagnosis and medications. I've been on treatment for a year! It usually just shows up here and there but these past two weeks it's happening a lot?


__________________
Happy
darla627

Avatar / Picture

Senior Member
Registered:
Posts: 158
 #2 
well thats alot going on i have significant memory-thought problems they have came to a point that they are not getting worse (thank the lord) i am on imuran, that helps u might talk to your doctor.my lupus causes my memory problems & it may of caused the two lesions on the hippcampus of my brain so you may have issues that needto be addressed by your dr. hope things settle down for you at your house & for protection put red tape around the monostat cream 😜
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,426
 #3 
I bet her hubby looks at the tube next time!!!
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
whylupus

Junior Member
Registered:
Posts: 22
 #4 
I have a pacemaker so I cannot have a MRI of my brain. They said," the Ct what show what they need to see?" They have me on plaquenil, methotrexate and, prednisone 20 mg daily. The memory problems was one of the first improvements I noticed after medications were started. My anti ds DNA was elevated at my last appointment. I developed pericarditis thanksgiving night and I've had problems every since with my improved symptoms returning! The memory issues just started getting really bad the last two weeks and the horrible headaches! I remember this time last year, thinking if I just get the diagnosis then I'd have treatment and get back to my normal life! I'm starting to realize that even with medications seems to stay active? My doctor started the daily prednisone and he said that we would discuss medications at my next appointment. I get confused when and what symptoms to report to him sometimes!
Thanks for the advice, I'm in my first year of treatment although I've been dealing with this disease for years just misdiagnosed! My symptoms before were more spaced out from each other and now they all seem to be happening together which has been overwhelming!

__________________
Happy
darla627

Avatar / Picture

Senior Member
Registered:
Posts: 158
 #5 
sounds like your getting hit hard & your taking meds ii don't know. i would write down any symptoms when it happens because i forget what all we need to talk about when i go to the dr. maybe your dr will adjust some of your meds. just don't think it will always be this way, it will get better when you get the right combo. to help with my memory i set alarms on my phone for important things, also write myself notes, any appointments are on my calendar ifyou think of any other ways to remember let me know i could use them.
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 964
 #6 
Thanks for the laugh!  If it were me, I probably wouldn't have caught it, and I'd have wondered why my girl bits were "minty fresh." :)

I'd consider asking your doc for a neurology referral. It's possible you have something going on that has nothing to do with lupus. Or it could be that it's become much worse because of the prednisone, which I understand can cause brain fog. I hope you get a handle on this soon: stress and anxiety can affect memory, too. 


Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,745
 #7 
There is something called CNS lupus. One of the main things is memory loss. To treat CNS lupus you need cytoxin. I did not know my kids birthdate who was president and I did not know y age. Those are only a few things that helped me get dx with CNS lupus. There are other factors. You need to cal your rhemy rightway andget treatment right way So please call your rhemy and it would be a good thing to bring hubby with you.



Note: Please excuse any misspelled works or grammar errors. I have CNS lupus and brain lesions and use a program to help me type

__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
lrbell

Junior Member
Registered:
Posts: 5
 #8 
Hi this is lrbell,
I take cytoxin as well but I take it because my Lupus attacks my kidneys.  That's the chemo I have to take.  That I am struggling to get covered by a infusion cente here in New Jersey.

__________________
Lisa R. Bell
judynurse

Junior Member
Registered:
Posts: 15
 #9 
I will be seeing a rheumatologist for the first time since my "possible" Dx of lupus with +ANA plus 4 different rashes, including facial ( 3 rashes on face, including butterfly rash). Meantime, my scheduled surgery to remove breast implants collapsed along with torn muscles in chest after speeding car hit me head on, had to be delayed a month. Developed bronchitis fay prior to surgery. Have been in terrible shape since Feb 27th.
As for memory problems, have been getting worse for no this. MD says he finds no symptoms of age related or other connections. Comes & goes. But frequent. Mostly, can't remember words, day of week, names, but recognize people. ( always have been bad with names, 'tho.) Use the smart phone daily for reminders. Remember a study done for over 25 years with a community of cloistered nuns, studying Alzheimer's. All the 70 to 90 yr old nuns showed plaques on brains but had NO SYMPTOMS. Functioned normally. Had all agreed to have brains removed after death to verify if Alzheimer's after death. ALL had massive plaques on brains, all had severe Alzheimer's. But no outward signs, normal behavior. Study finally said that daily routines every day, week, season prevented any symptoms or loss of function. Only 3 of them left from original study, all in 90"s. Seems trick to keeping mind working normally is a standard routine daily, weekly. Started this myself, except for lifelong problem with remembering names, it is starting to work! Still forget words at times, usually when regular meds are increased. Otherwise it is working!! Anyone else note that reg routine helps memoty??
judynurse

Junior Member
Registered:
Posts: 15
 #10 
If this works so well in a 25 yr study of Alzheimer's, perhaps it will help with memory problems in Lupus, and with plain old age too!?
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 964
 #11 
I don't know. I can tell you that teaching involves a regular schedule, pretty much. After school I always worked out, ran an errand, then home, shower, dinner, grading, bed. Repeat. And I was still forgetful.

The study you spoke of...I remember it and so looked it up again. It doesn't seem to have been the routine that made a difference: all nuns had routine schedules, but some developed Alzheimer's, and some did not. Here are some conclusions from the study (which is ongoing) that may be relevant for all of us:

1. Nuns with a positive outlook tended not to develop Alzheimer's. 
2. Nuns who packed a lot of ideas into their writing, using more complex sentences, were less likely to develop Alzheimer's. So I'd assume a nun who wrote, "When I look out a window and see trees bending in the breeze and children holding their hats on their heads as they run for the school bus, I'm glad I'm out of the wind" were less likely to develop Alzheimer's than a nun who wrote, "I looked out the window and saw it was windy."  
3. Reading aloud to children may help. (Note how many of these have to do with using language!)
4. Behaviors that improve cardiovascular health and decrease the odds of a stroke also reduce incidence of Alzheimer's: not smoking, exercising, etc. 

BUT...this is one study only. Other studies need to be done. And there are many reasons for memory loss. Still, the idea that being happier makes us healthier is good for us in all kinds of ways, right? :)
 
lrbell

Junior Member
Registered:
Posts: 5
 #12 
Good morning this is lrbell,

I know that it would be a blessing if this study actually works fighting against alzeimers.  I remember when I was working I would be in the middle of a sentence talking to my boss and I would forget what I was talking about; which would leave looking like a deer in headlights everytime.  I would always say to her let me walk back to my desk and start over.  There were days that I would still be sitting at my desk and she would say , I thought you wee coming and I would say I'm still thinking...lol 

__________________
Lisa R. Bell
Previous Topic | Next Topic
Print
Reply

Quick Navigation: