Peggy, I was dx in Nov 2007 with CIDP and have been in a mental fog sense.
Was having a great deal of trouble with concentration focus and memory.
Since my last phresis treatment I have felt mentally clearer and it is easier to focus.
What meds are you on, thought could be adding to your difficulty?

OK, so CIDP effects the peripheral nerves and memory belongs to the central nervous system. Therefore it shouldn’t effect memory, [B]but…[/B]

According to aeronautical engineers Bubble Bees can’t fly, but nobody has been able to tell the bubble bees that so they keep on flying. I have CIDP and I have experienced memory problems. Is it the CIDP, is it the meds or is it “old age”? I’m not sure which is it, but I know I have memory problems. Now what was I writing about…:rolleyes:

Does your dr have CIDP? If not, then how can they know for sure what is part of CIDP & what isn’t?

Many people who post here have complained of the brain fog feeling. When Emily was dx’d (at 4 years old) right before a relapse she would start stuttering & have trouble completing her sentences. So yes, I think that memory lapses can go a long with CIDP.

Kelly

[QUOTE=Peggy]I need to know if CIDP affects memory. I am having trouble and my nero doc say’s it does not. This is scary for me. I have been doing so good but in the last month the tired weak and muscle pain is back I have not had to have treatment since the end of September. Thank you for your help.
Peggy[/QUOTE]
Hi Peggy,
I know that when my husband was in the midst of a major attack last July(he was in the middle of being diagnosed and hadn’t received treatment yet) he certainly had some thinking problems i.e. he would just sit and be rather blank and apathetic and he would never remember things that I told him an hour before. I brought it up with his neurologist and she basically said it wasn’t CIDP related. But it is interesting to note when he saw her after having had IVIG (initial loading dose and then the following month’s dose for two days), she commented that on his last visit “you seemed cognitively impaired, and now you are so much better”. So there has to be a correlation to the CIDP with memory and cognition. Hubby is like a different person since having six months worth of IVIG–i.e. memory is normal again, apathy is gone, grip is stronger etc. There is a conference next month on CIDP in Vancouver and I will ask questions about memory and cognition and CIDP.
Laurel

I too have memory problems, and I’ve been at this for 5 years. I had that deep blankness in the beginning and it got better, but never completly well. Some is likely the meds. and for sure some is the age thing. I have some friends older than me, and I love being around them because they make me feel “normal”!
Mary Ann

Peggy,

My memory while better, was horrible post-CIDP. My Dr. told me it was probably PTSD but it seems too common among us. I found this on another website, take it for what it’s worth but it sounds reasonable.

[COLOR=Blue][B]smart-kit.com/s203/prednisone-and-memory-loss/[/B][/COLOR]

[B]November 11th, 2006[/B]

Prednisone is a corticosteroid, and neurologists typically prescribe it quite often, as many of the diseases we see respond dramatically to it.
Examples include multiple sclerosis, myasthenia gravis, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), intractable migraines, as well as polymyositis. Other specialists like Rheumatologists and Pulmonologists also tend to frequently prescribe it for patients with arthritis and asthma.
Unfortunately, while reminding patients of prednisone’s side effects (which are many!), not uncommonly most of us fail to tell them about [B]memory loss[/B].
Why is prednisone such a brain buster? Prednisone is a corticosteroid, a hormone that is directly toxic to the main memory engine of the brain- the hippocampus. In severe cases, a corticosteroid dementia can even develop.
Hope may be on the way though. Just read a study which utilizes gene therapy to transform a corticosteroid signal (which normally damages the hippocampus) into an estrogen-like signal (which has favorable effects on the hippocampus).

and

here is a google search which has tons of links to studies showing memory loss in long-term Prednsione use. So between PTSD and prednisone it sounds like a perfect storm. Cut and paste into your browser.

[COLOR=Navy]google.com/search?num=30&hl=en&safe=off&q=prednisone%2Bmemory+loss&btnG=Search[/COLOR]
[COLOR=Navy]
[/COLOR]

More than memory, I think we have some level of cognitive impairment like in MS. I have trouble remembering faces, places, procedures, and is giving me trouble at work. I write down everything I´m doing not to forget it and mistake.
Neuros said CIDP has nothing to do with cognitive impairment, but where are the tests and surveys to prove it?

I agree 100% PJ. I have commented frequently to friends that my husband has concentration and memory problems since developing CIDP. And they haven’t really improved dramatically with his treatment. I would describe him as just a little slower on the uptake and processing of info since his illness.
Laurel

Hi there,
Yes, I have the dreaded “brain fog” as I call it. I think mine is from the fact that I get soo fatigued from CIDP and that impacts on my ability to focus/concentrate for too long. I have gone back to studying part-time and I have to do my study in short bursts – otherwise it’s a waste of time as my concentration goes. Also using the brain uses energy – energy is another thing I have found my CIDP saps! I find if I do a study session then I don’t do other things that require energy during that day – eg: housework (not that I mind that 🙂 except I get a bit behind..oh well. It’s like I have been given a certain amount of energy for the day (mental and physical) and I have to use it wisely!
Good luck,
Kazza

Isn’t memory loss also associated with B-12 deficiency (I can’t remember :>)?

All

This issue, along with the fatigue, and “noise” from the pain and other sensations really causes me ongoing problems.

I do believe some combination of the medications as well as the other symptoms contributes to the fog; but, I firmly believe that the fog exists as a symptom rather than a side-effect of CIDP/GBS.

Other threads have spoken about being “blank” about where they are at a moment — and, also forgetting names, chores, etc. I get blank about what I am supposed to be doing at a given time, and I forget appointments, etc. even with a diary and reminders!

But, the most devastating thing was the degredation of my fast critical and analytical thinking skills. I used to do alot of facilitation of meetings where you have to keep ahead, summarise and feedback at pretty fast speeds over a long period. When I lost my ability to do it (through fatigue, or pain, or medication, or whatever!) I lost one of my fundamental skills. It was horrible. This goes on to this day.

The interesting thing is that I went for a whole battery of cognitive thinking tests — for about 4 hours. I was exhausted at the end of it !! There was numeracy, literacy, patterns, recognition, speech, memory, etc. The report basically said that while my basic skills were unimpaired, i.e. I haven’t forgotten how to do these things!, my memory, and my response time were significantly impaired. My performance degraded towards the end of the test. There were some other interesting things as well – like, the pattern recognition and complex thinking were low, but essentially it was “holding my memory” and response time that were the issues.

Anyway – it gave me some assurance that there were issues that are not related simply to the drugs, as it had been some years since I started taking them — while I was still working.

Hi Debs,
Thanks for sharing your results from your cognitive thinking tests with us! Yep, I bet I would have the same outcome. Not only has my physical stamina reduced dramatically but also my mental stamina has also been affected.
It is so frustrating isn’t it! I do find though, I sometimes have a reprieve (from the brain fog) when I am feeling stronger and this window of opportunity is what gets me through my study at the moment (I’m trying to finish a degree I started before I came down with CIDP).
I can’t blame medication for my fog.
Kazza

Hi Peggy,
First things first, September is a long time to be without treatment. Kevin too can go a long time, we suspect 41/2 months before we see a symptom. But once you see a symptom, it is too late the process has started and more damage has started. You need to be on a regular schedule, not wait till the next relapse.

Regarding the memory, I think that there is a connection, the doc, literature, abstracts, suggest not. Kevin has difficulty with particular things, such as math. I am still in the process of figuring out if it is selective or real though, since he is able to memorize all other things. It has been discussed on this ssite before and math specifically has been brought up. So good luck with your search and please keep me posted if you find out any info, as I too am searching for an answer.
Dawn Kevies mom

Hello Peggy,
I agree with Dawn. If you start feeling symptoms again, that means you do need treatments. Some of us probably have to be on a maintenance for a lifetime and you now need to find out how often you need them. Maybe every six months would work for you since you’ve been off since September. Maybe if you went back on treatments, feeling better might help your memory.

Yes, I’ve had some problems with my memory – I once forgot where my parents lived (where I grew up) for about three months. That was pretty scary but I eventually remembered and haven’t forgotten again. I don’t know that there is anything organically wrong re: memory, I just think it’s because I’m sick all the time, don’t feel well and my brain gets the short end of the energy stick. We do keep scanning my brain to see if there is anything wrong and while I’m still waiting on last week’s scan results I’m pretty sure all is well. However, apparently I am getting aseptic meningitis from the IVIg though and that can cause confusion and memory problems. I think I’m going to blame it on the IVIg even if it is just old age.

I keep lists on the fridge and carry a little cheapo voice recorder and if there is something really crucial I write it on my hand so I see it all the time. Doctor’s appointments they usually call me twice the week before and once the morning of the appointment which has kept me from forgetting any more of those. Mostly I try not to stress out about it too much, I have enough anxiety about paying bills, being able to see and walk properly etc. without adding anymore worry about my memory. :p

Julie

Peggy,

If you do a search on here you should find quite a bit of information on others here including me who have had memory issues since CIDP.

Cut and paste this into your browser:
[COLOR=Navy]
gbs-cidp.org/forums/search.php?searchid=93608

[COLOR=Black]I have had memory issues for 3.5 years since CIDP, I have heard the same things about it not being related to CIDP but I really wonder. It sure seems to be pretty common. I am on Ritalin and it has made a world of difference for me. If I can be of any help please contact me.

Jerimy[/COLOR]
[/COLOR]

I never had a problem with numbers before CIDP but now just doing the checkbook is a nightmare with what used to take me 5 min or less in my head takes me about 3hrs with calculater, and dates, ages, appt times forget it we have 6 calenders up around the house so i know stuff i need to. My doc called it fybromyalgia fog but that is different for me because that just made everything hazy so after we talked about when this started almost a year after the fibro dx and shortly after my symptoms started withCIDP he believes it is the cause of this issue. and boy when the fibro fog kicks in i may as well forget trying to remember anything LOL i am a mental blob! Just because a dr says it is not does not mean much since they are still learning what this disease really does o everyone. good luck to you and my prayers are with you.

Peggy ~ there are many of us with memory issues since GBS/CIDP. Just because the medical community doesn’t know/acknowledge it does not mean that it doesn’t exist! (I didn’t remember that Jodylynn had already said this :p ) Just ask us who experience it 😮

good one Judi! 😀 Over the last almost 17 yrs(in July) my son’s doctors have learned alot about his rare medical issues. they initially stated he would not make it to his 1st b-day but they were wrong because they didn’t know alot then and even now most info they have with his multi dx problems theyhave learned from him. One thing I do have hope for with this disease is the fact it is not as rare as my son’s conditions and there is at least research and more that can be done. I feel that our memory can be affected by this and in the way it happened with me my primary also believes that it could also and should be looked into. All it takes is getting one doctor to really listen to you and know you well enough to get the ball rolling. Unfortunately my son and I both have the same primary at least for him anyway :D. He is good about getting us referrals and coordinating medical but many times he has asked us if we could please come up with some kind of run of the mill problem so he doesn’t have to be on his toes all the time? he is starting to feel like a ballerina! LOL:D 😮