AnonymousJanuary 16, 2010 at 12:06 am
i dont know, i cant remember……
im sorry its not funny, just trying to make u smile……
i find myself struggling sometimes to remember things, i ask people questions but dont really pay attention to the answer so i dont remember later, or phone numbers i once knew i draw a blank…… i hope u find the answers ur looking for
AnonymousJanuary 16, 2010 at 8:22 am
Hi there! Read your post and thought I would tell you that just yesterday,
when I got to work, after I logged in, I checked my mailbox, went to my room and looked around-my purse was no where in sight! I thought, “Oh I must of
left it in the lounge when I logged in!” Went back there, no purse! OMG I
thought, someone must have picked it up. After searching for several min.
my friend said did you leave it in your car? NO, I’m sure I brought it in! But
after the fifth time of walking in circles I decided to check my car. There it
was on the seat with my keys hanging out of it, and guess what, my door
was locked. After calling my husband and feeling like I just had another blonde moment, I told my friend that I was seriously getting worried about
not being able to remember anything lately and was wondering if it had to
do with my CIDP. I feel like I live in the state of perpetual confusion!!! You’re
not alone my friend, sorry.
AnonymousJanuary 16, 2010 at 10:52 am
[QUOTE=lovemyford]can anyone shed some information; possibly, my question; has any member heard from others suffering from memory loss?[/QUOTE]
Where do I begin….my short term memory,word recollection, and spelling have all become awful, I also now have dyslexia like spelling errors when typing.????? Never had this until recently, but think there is a cognitive issue for many sufferers of CIDP, BGS, MS. : (
January 19, 2010 at 1:07 pm
There is no data that I have found other than from the wonderful people here on memory and “brain” related issues after GBS/CIDP. BUT, there is a thread all about the things we have experienced with brain fog, memory loss, even a feeling of a change in our IQ’s.
I would love to see research done in this area, but what is the baseline? I mean they can tell if we have nerve damage because the machine says we do based on the “normal” reaction of normal nerves….but it doesn’t know what our [I]individual[/I] baseline to begin with was. With the memory problems etc, since they do not know how we were before, there is no way for them to tell us whether or not we really have suffered some sort of problem because of GBS. And nothing shows up on CT scans or MRI’s.
I know I went from feeling fairly confident about learning something new, wrapping my brain around things, and remembering where I put something or why I walked into a room…to not being able to recall a word I am trying to say, where my keys are, what I did with such and such, and often ask my kids in the car “where are we going?”. I also feel that my 132 IQ dropped way down! Some days I feel so stupid it makes me embarrassed and I want to cry.
You are not alone.
AnonymousJanuary 19, 2010 at 10:23 pm
I was in a Rehab Facility located in Jeffersonville, IN. This is just accross the Ohio river from Louisville, KY. When I was able to use my slide board my wife could check me out for one hour on occasions. I love fish and each time we would check out at lunch time and go to a place called KingFish. Rosemary would get a fishbox for two and we would drive to a park on the waterfront and have our lunch.
I have been on those roads hundreds of times, but I could not remember the streets, turns, etc., or how to get to the riverfront park. Knowing that I had a blood staph infection (with GBS and other diseases), pneumonia and that my temperature of 107.9 with BP of 44/0…I was thinking that maybe the high temperature may have caused some brain damage. And I could not remember how to get back to Rehab. This continued each time we went out, and about 2-3 months after I was released and came home.
I don’t think I have brain damage, however my speech is at a slightly slower pace than it was. My long and short term memory is very good and other than maybe the first 7-8 months of memory “fog” things are pretty much normal.
Regards to all.
AnonymousJanuary 20, 2010 at 3:59 am
Memory loss, i can relate to that . Peoples names words,i was walking around in circles looking for my car keys starting to panic finally found them on the washing machine lid ,no idea why i put them there and dont remember doing it. I take my tablets first thing in the morning and there are days i wonder if i have or not.Forgot which aisle the rice was in at the supermarket and ive been shopping there for 20 years. Things like that happen most days and my husband thinks ive lost the plot but i told him thats what gbs has done to me. Does it get better with time ?:)
AnonymousJanuary 20, 2010 at 12:02 pm
Boy can I relate! Last weekend I went to blockbusters to rent a movie. When I got home with it my wife said that we watched that movie last month.
I’m almost 8 years post with the usual residuals. I, like many of us, take a lot of MEDS. I believe that’s the reason for my memory loss. What do you think?
Take the rest of the day off,
AnonymousJanuary 20, 2010 at 10:22 pm
I had to keep scrolling up to the top to the page to see what the topic was. Does that give you a hint? There is an upside to the whole issue. I cut my library down to three books and eleven videos. By the time I’m finished with the last book, and the last video I forgot what the first was was about so I can start the whole cycle over again 😀
AnonymousJanuary 21, 2010 at 12:26 am
[QUOTE=Jim C]I had to keep scrolling up to the top to the page to see what the topic was. Does that give you a hint? There is an upside to the whole issue. I cut my library down to three books and eleven videos. By the time I’m finished with the last book, and the last video I forgot what the first was was about so I can start the whole cycle over again :D[/QUOTE]
Glad to know I am not alone……my memory is shot, movies, books, any short term memory stuff, is virtually gone unless I am prompted, once prompted I can usually answer correctly/remember. Now my spelling and word retieval is lost too… 🙁
January 24, 2010 at 8:38 pm
Yeah try having GBS and menapause! Double whammy for me. Keep on smiling:)
January 25, 2010 at 8:03 am
From everone’s experience, post, and what I see in Kev, I would say they are wrong, there IS CNS involvement. Or maybe stress because of the gbs/cidp causes depression/anxiety which causes the emory issues, or maybe my question of my latest wacky idea (leaky gut) causes it, as memory/concentration issues is one of the symptoms. I have no idea, but I am so sick, frustrated and confused about all of this crap. I just want a re-do and I want this crap to be out of our life. I am sick of a 13 y/o boy having maybe 2 good days out of a week, that is crap. What is the point!
AnonymousFebruary 4, 2010 at 7:41 pm
I read all of the posts with this thread and can relate. first they attributed my memory issues to the drugs i was taking. Now i am off most of them but still having memory issues. I constantly have short term memory issues. it really frustrates me and my parents(whom I live with). My sisster deals with it by writing things down or calling me constantly. I pick up her children from shcool sometimes and get lost. At least on the way home lmy nephews can give me directions. I am lucky that i can drive right now. Cidp is progressing though. I find that i constantly ask what day it is. After 24 hours the memory from the day before is gone. i think it frustrates those around me more than myself. I guess i am used to it now. My boss at work has learned to adapt to this issue.( i work 10 hours a week at the mental health association) I have tried writing things down but find that often i dont know what the note means. The doctors dont seemed concerned, I have had brain scans and everything looked ok. I am waiting on a kidney stone to get taken care of then they will start IVIG. I have not had it before. I had GBS now CIDP. With GBS was paralyzed to my eyes and now numb and tingling from the chin down. I walk with a cane or forearm crutches even a walker sometimes. I see a neurologist on a regular basis. I guess we will see if the ivig will make a difference soon.
AnonymousFebruary 6, 2010 at 9:11 pm
i’m soon to be 42 and have had gbs now for 39 months. i have problems with what people tell me or what i have done.i can’t think of the proper word alot of the time for an item. i cant remberer to tell people everything so i call them a few times a day like my mom, sister, or aunt. i still take my meds for gbs and pain. i dont know myself what causes this memory loss.
AnonymousFebruary 22, 2010 at 12:22 am
I have been dx for 5 years now with CIDP and have done really well the last several years. Very well! We live in Kansas and the winter weather has been real bad this year, lots of cold and snow. I also have been on 90mgs of morphine MS contin daily for the last several years. Over the years I have found my memory slipping. Forgetting names numbers and thoughts in the middle of conversation. It was gradual and also the ringing in my ears has become almost deafening…..that is an oxymoron. I had contributed this all to the morphine long term use and other medicine that I have taken over the years. Then I find out that this is all part of the disease process combined with the medicine. I have started playing memory games on the computer and word games like scrabble. Believe it or not I think it has helped a little. NO MUCH but and help is better than nothing. I am starting my first Solumedrol treatment in two years this week due to severe fatigue and pain. Does anyone use morphine to manage the pain or other meds? I would love to get off the morphine but when I asked the doctor he laughed at me and said probably not. He was not rude just realistic. Everyone always in my prayers and to all be safe and remember to always keep the faith.
Look forward hearing others posts and comments…….:)
AnonymousFebruary 23, 2010 at 9:57 pm
Memorey loss, yes; short=term loss has been just terrible, but I still can recall much of my childhood and other long-ago memories.
With the gbs, I ‘v ehad to reprogram meyself to talk again, to read again, to think things out in order again, to spell, and correct errors, to read in a straight line, because my eyes jumple the letters around now. I used ot have almost perfect reading/writing/spelling skils, but now it’s pretty bad, expecislly whne tired. Still have lots of trouble remembering things from moment to moment; helps to tune everythign else out and just focus hard on each thing I do.
Some good news, I watch rfavourite movies over and over again, memorizing lines, trying to get my mind to ffocuc on the plot, stating aloud what each person is doing and saying their line s wiht them.
For example: Pirates of the caribbean
Took a long time to actually be able to follow MOvie 1, kept falling aslepp, couldn’t understnad whyy Liz is on different ships so often. How did she get there? Why??? Guess what, just lately I watched Movie 1 again, and didn’t fall asleep, and actually followed the plot through from start to finish. I remember that it seemed logical at last. Though right now I can’t remember hwo Liz did get from ship to ship or why, but while watching the movie, I did follow it. Same with the other two movies. Still can’t understand Will going back and forth from Beckettt to Jack to Davy Jones; can’t folow the scenes, but it’s getting better.
I have found that it really helps to talk aloud just to help clarify my mind and verbalize my thoughts, and put order into my speech. Lately, I’ve been able to pucker my mouth again and can whistle again after 2 years. I am now starting to sing again; muscles in throat were too weak before, but now I can sing some songs again. Scripture is coming back to my mind again; long-memorized, sometimes I start singing songs that apply exactly to my present mood, whcih is what I used to do all my life before the GBS happened. So there is progress. But one big load of brain damage to deal with; and we’re all working through it as best we can.
Sorry, didn’t correct mustakes this time…too tired.
AnonymousDecember 11, 2013 at 7:22 pm
My bout with Guillian Barre (Miller-Fisher variant) was 27 years ago. Ever since then, I’ve had issues with memory and control of my emotions, both of which have gotten much worse in recent years. It’s frustrating and embarrassing, but what are you gonna do?
At least I don’t have much in the way of physical issues, but I’m part of that 20% that never fully recovered, with only very minor issues with limbs and only 90% recovery of eye movement. Not too bad. It’s the memory and emotion issues that bother me the most.
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March 2, 2008 at 11:01 am
sorry no info
AnonymousMarch 2, 2008 at 11:40 pm
I wish I knew the real answer to this question, it has been brought up many times through the years & I know that many of us have it. I used to be a math (and English) teacher when I came down with CIDP back in 2002 at the age of 48. I no longer attempt even my checkbook without using a calculator. I struggle to find the names of even the simplest things, & forget about my remembering names.
I am on 1800 mg of gabapentin (generic for neurontin), but I don’t believe this is the reason. I am aware that I am worse when I am fatigued, but I also have these problems during the daytime. I wonder if there isn’t some kind of CNS involvement for some of us, as I know my eyes are not the same, nor is my ability to swallow. I hope there are a lot of posts on this subject. In the meantime, listen to your son, I don’t think this is a case of selective memory.
AnonymousMarch 3, 2008 at 11:37 am
I know I have issues that I didn’t have before. And I am embarassed when someone says “I just told you that last week” and I honestly don’t have any recollection of the conversation. Funny you mention math too, because I graduated with highest honors ( a few years back) and sometimes I just can’t add or subtract the simplest numbers. I have researched and there are a small percentage of CIDP patients ( I think it about 8%) that have CNS involvement. So I don’t believe it is just him, as I am sure there are others with the same symptoms.
AnonymousMarch 3, 2008 at 1:42 pm
In school I was always able to memorize information for tests too. I was good in every subject but math. I just could never understand it and I could never figure out why I was not able to figure it out! Only now am I starting to understand more difficult math and it takes me a while to actually understand. I always thought it was just me-I did not know others with CIDP/GBS had these same kind of problems!
March 3, 2008 at 3:08 pm
Thanks for the responses guys. I guess if others feel as I do, there MUST be cns involvement. I guess we are really sisters to MS. On one hand that totally sucks, but on the other hand, at least ms generates tons of money for research. I really think there is something with that bht-3009 vaccine. I e-mailed Dr. Amitt Barr-Or at Mcgill University in Canada (the lead researcher) regarding the connection, but he has yet to respond. I cannot rest or die till I exhaust every possibility to figure out this cidp crap for sweet little Kevie.
AnonymousMarch 3, 2008 at 5:31 pm
I know in my case, CIDP has caused brain fatigue and I find I must limit my studying to half hour blocks – at the most – with a break in between – any more and it is too tiring for me. Also, if I have been doing other physical tasks, this will affect my mental functioning as well. It can be so frustrating!
I find, as everything else is harder to do (even walking on flat ground feels like walking up a hill) I just get so tired and this impacts on my mental functioning. Also, using the brain for more complex tasks – uses more energy as well – which in turn can tire one out quickly and then concentration goes out the window! That’s why I need frequent rests in between studying.
I can’t blame medication for the brain fog, as I am not on any.
AnonymousMarch 3, 2008 at 6:12 pm
Hi Dawn, my brain MRI showed 7th cranial nerve inflammation. I don’t have Bell’s Palsy symptoms though. I do have a lot of brain fog and it is like, I blank out, lose my train of thought. I think some of it might be the prednisone and some of it might be the stress of worrying about my illnesses (I have more than just CIDP). But maybe it is the CIDP affecting things in there (in my head). I always worry if maybe I am developing MS, there just wasn’t time for the lesions to show up yet on the scans, since symptoms came on early and I was diagnosed quickly. It is scary.
AnonymousMarch 3, 2008 at 6:27 pm
I also have the problem with numbers and names and math was always my best subject. my dr told me that it wass fibromyalgia fog but it didnt really start happening until after the CIDP started. Also 7 years ago when I went through th gbs i had problems remembering but not sinificant enough at the time to worry about it. I also do not dare do the checkbook without a calculater anymore and alot of the time I have my husband recheck it. It used to take me 5 minutes now 2-3 hours so there has to be some kind of connection.
AnonymousMarch 4, 2008 at 2:07 am
Does Kevin take gabapentin for pain? The reason I ask is that I noticed feeling slow and stupid when I was taking 1200 mg. I have cut back to 600 mg and am much sharper. I wish I could cut back to zero, as I would be sharper yet, but I can’t quite do so. I trade some pain for being mentally quicker, but it is a trade-off I am happy to make.
I know Pam H is not affected by her usual dose of gabapentin, and others function well on high doses. Others don’t. For example, my neurologist had a colleague, also a neurologist, who was suffering from neuropathic pain. He obtained relief with gabapentin, but he felt it made him about 20 minutes slow (i.e., an answer that previously would have take only about a minute to arrive at was taking 20). He quite gabapentin and lives with the pain.
Let me offer some general comments about the cranial nerves. Cranial nerves I and II (olfactory and optic, respectively) do not originate in the brainstem, according to a Wikipedia article, and therefore are not considered peripheral nerves. The other ten do originate in the brainstem and therefore are more like peripheral nerves than anything else. This is not to say that CIDP’ers might not have some CNS involvement; it is just to point out that cranial nerve involvement is not CNS involvement.
AnonymousMarch 4, 2008 at 5:32 am
Ditto what Mark says though I will say having your cranial nerves affected makes it much harder to concentrate on things period. I don’t know what is causing the memory loss, last year I had two brain MRIs and both showed an area that was “shadowed” (whatever that means) but every neurologist that has looked at the results has said “it’s not MS.” It’s been a year and I’ve been thinking it’s about time for me to make sure there is still something floating around up there so I’m going to ask for another MRI on my next visit to the doctor. That might be a few months so hopefully I’ll remember to come back here and post what the doc says about memory loss/CIDP/and brain shadows.
When I say memory loss, I’m not talking about the every day “why did I come in this room” type of memory loss – I could not remember the name of the city, state, or street address where I grew up and my parents still live for nearly 5 months. That is SCARY! People I’ve known my entire life or just met the week before and I can’t remember their names or how I even know them. Some of that memory stuff is better, I remember where my parents live now and all, but sometimes new things crop up and it scares me a little bit. It helps to know I’m not the only one out there who is having trouble though. 🙂
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