can anyone tell me whether they have memory loss and confusion since having CIDP. This is causing me some concern and I cant find articles relating to this. Thanks. Brenda
Talk about confusion, try editing and saving it here. I thought I was the only one with this problem but I'm glad to hear I'm not the only one. I worked in the mental heath field and I used to be able to direct a client to any resource they were in need of, but now I have trouble remembering what I did three or four days ago. Gary
My cognitive ability has suffered greatly. Some days are just a blur, I can't concentrate on anything. I have always been an excellent speller, but now I have to sound out words to spell them. Then the little red line appears under what I thought was right. I'm going to have to buy a dictionary. I used to remember dates and details, not now. I live with my calendar. I have to write things down when I'm thinking of it or I will not remember it later. It's hell for someone who is detail oriented.
I cant remember if ive had memory problems or not!!!!!! just kidding
with Demyelinating conditions it is possible to suffer from Aphasia if the demyelination affects the brain this can cause a number of different occurrences including memory and cognitive deficiencies to personality changes although its not a common result of CIDP. I have suffered from frontal lobe aphasia in the past that resulted in my being very angry towards people to the point of wanting to punch them in the face and showing very little in the way of emotion. I am getting better but find that during my relapsing phase's I do tend to get angry a lot more over silly little things. My memory is also affected and I can sometimes stand for 10 minutes in the shop trying to remember what I went there for, its a great excuse for forgetting birthdays even if at the time its not affecting you, but SHHHHHHHH that will be our little secret
Jordan, We should start a "Spell-Check" club, because I know exactly how you feel. I use the dictionary and calendar on my phone to remember dates and appointments, all I really have to do is remember to put the appointments in the calendar. Gary
PS: note I had to make two tries to answer this post initially.
Yes, my wife is always on me about not knowing dates, times, places, etc. I've recently begun to agree with her. If it weren't for my cell phone, I wouldn't remember anything. As with Jordan below, I'm very anal, and detail oriented, and I infuriate myself when I can't think quickly enough.
i've also experienced some of what Bill & springmag wrote about. I'm an amateur photographer, with a fairly complex "post processing" program. At times I will stop in the middle of processing a photo, and forget what rot do next. Un;less things get better, I'll have to give up the camera club and my one last passion, and the last hobby I could still do, photography.
Sorry this took up so much space, I'll reduce it when I'm feeling a little better. Henry
Nice work Henry, I just picked up a Fuigi 1500 for a song and have been thinking of trying my hand at this since I can't play my guitar for now. But never say die Henry, I won't, keep your chin up and don't give up!! Gary
Yeah, I've been there with the "brain fog," myself. Usually, it's pretty mild, but there, nonetheless. Would love to see more research on the topic.
I've been wondering is it the CIDP itself or the strong painkillers I've been eating for 10 years now..
Definitely my mind has gotten sluggish, I can't put events on their right places on timeline, nor remember where I should be and when..
They did a pretty thorough examination when still looking for diagnose, and it included memory tests and other psychological tests. I'm pretty sure that if they where to be repeated, the results would be that my mind is deteriorating very fast :/
Well I've done a search and there seems to be nothing on the topic. To Veera, since you haven't mentioned the pain killers you're on we can't help you with direction. Gary
springmang said:
Well I've done a search and there seems to be nothing on the topic. To Veera, since you haven't mentioned the pain killers you're on we can't help you with direction. Gary
My meds are Tramal 50mg x 4, Lyrica 300mg x 2 and Norspan 20
Since you've been "eating" these drugs for 10 years what else have you tried. Gary
You mean for the nervepain?
Other than meds, I have this TENS-device that sends mild electric shocks to my mucles, it helps in minor pain.
Norspan 20 has been the latest upgrade on my meds, since then I've been able to cut down Tramal usage.
I'm hoping to get fully rid of it, maybe Noritren will be enough to fill the gap, atm I can't function without these 3 drugs.
Streching helps sometimes, and trying to go for short walks as often as possible.
Cold/hot treatment also can bring short time relief for mild pain, but when it gets intense, non-med treatments are useless :/
For controlling the CIDP's progression, I've been having IVIG for the same 10 years, from 4 to 6 weeks intervals, 2 days in a row.
And for the word "eating" ...
English is not my primary language, and I have pretty much learned it all by myself from tv and internet,
so excuse me for my bad grammar. Let me correct myself; "I've been taking the meds..."
I hope it's not mandatory to be a british citizen to be able to stay in this group?
But I was gonna say something about the 'brainfog' some of us have experienced. Well 2 things could cause this actually:
1. Many people, in Finland atleast, get something else than painkillers for nervepains, especially at the start. They get prescriptions for mood medication, but they are told that the drug is for raising the pain threshold. The drug might work that way too, but mood and depression meds and even psychotics, are more likely to make you feel "zombiesh", and make you more forgetful and tired.
2. When you have one autoimmune disease, it can be likely, that you get another. In many cases, the next one is autoimmune inflammation in the thyroid, and it causes hypothyroidism. It has various symptoms, but most ppl experience the feeling of the 'brainfog' among them.
Both examples are true in my case, a month ago they discovered low thyroid function, and I'm on Thyroxin now. Also, after learning ALOT about those mood meds I used to take, I have tapered off all of them. And I feel better than in years and years before!
But this is only my story, I would love to know if there's similar stories out there?
Yes, I'm reviving yet another thread. I thought that I had a lifelong struggle with ineffective thinking and poor judgment, but everyone has noticed my problem since getting CIDP As you know, the anger, guilt, frustration, and depression that many of us suffer from can be just as debilitating as the physical. My memory hasn't been affected but the brain fog is in full swing.
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