question for any w/CIDP

WendyLouise:
Absolutely! I was diagnosed with CIDP in April of 2010 and I have noticed exactly what you are talking about. I feel like my tongue is swollen and fuzzy, and gets in the way when I try to speak. I also mispronounce words much more now than I used to. I have also noticed a definite impairment of my cognitive function, especially my short-term memory. Sometimes I will begin a sentence and have to stop because I forget what I am talking about. I don’t know if it is the CIDP, the medication (Lyrica for pain and IVIG), or some combination of both, but it is definitely present and can’t all be from the aging process (I am 48). I am sorry you also have these symptoms, but I am glad I am not imagining these things.

[FONT=”Microsoft Sans Serif”]so sorry that you got this thing…

to answer your question, i would have to say yes to the mouth feeling weird but no to any brain fog. however, some of the meds often prescribed can certainly cause brain fogginess! not sure what you’re on– also, for many, including me, ivig made me feel lots of unpleasant stuff. if you’re noticing a change in your thinking capacity now, i would venture to guess that you are not all of a sudden “getting old…”

many things were strange about my mouth– including an inability to taste anything. also, brushing my teeth was actually painful. further, i had difficulty swallowing.

i also had double vision throughout my cidp. once i had my stem cell transplant, and my cidp went away, all those symptoms resolved.

in short, check your meds for side effects that may impact thinking…

best of luck,
alice[/FONT]

Couldn’t complete more than simple sentences, and would forget THEM when I was half way thru? Had to carry around a note pad to keep what thoughts I had written down, so I’d remember them. Tongue tied to boot!
It WAS sort of similar to when I’d had a very bad concussion years ago? In the total and remote sense of ‘disconnect’, But I’d read up on the prescribed meds’ side effects and that they can cause them as well [Web up your pain and other meds by name and go to their full-prescribing information.-Where side effects and other fun possible complications could arise. Read them and be suspicious? There are over 50 meds to help with pain -but not all of them work for all of US!] I’ve changed meds and that aspect is ‘mostly’ gone.
Now, as to wether it’s a CIDP ‘thing’ or not? It mite be a medication thing!
Just be sure you get heaps of rest, and good nourishments! Those aspects and keeping to mostly unprocessed foods [with some well? Sins in this area?] You can help yourself immensely. Try taking Methycobalamin B-12, It’s to promote new nerve growth and it works, but takes a VERY long time…
other vitamins can help as well. Do research on it, please.
Like Alice, I too had vision problems… diagnosed by a neuro-opthamologist as ‘non-aura migraines’…go figger. Mine was more like a fog passing over the horizon of my forward vision -like driving thru a thick ground fog only GRAY-darker. Would happen 5-20 times a day! Scary, but it went away [WHOOP!].
It’s scary to terrifying at times, when this ‘stuff’ goes on? But key to getting thru it or around it is to keep calm. Relaxing, when ‘IT’ happens? is the truly best thing you can and should do!
It’s kind of like when you fall? And in a split second your brain and body are almost screaming: I’m Gonna Fall!!! EEECK! Well, if you just say in yourself? Yep, I’m falling, gotta CHILL? You mite just escape drastic damages. Easier to flop down on hard surfaces than go splat!
Alice? That taste thing? Or, lack of it? It’s wicked isn’t it? Can’t appreciate good food for anything anymore! Durn it? It’s boring! Hope this helps, Wendy-louise! Keep asking questions, not one is too silly to ask, I’ve asked a heap of them myself! Don’t be shy!

I have experienced brain fog as well. As others have mentioned I am not sure that it is the IVIG causing it. It is my personal opinion that the combination of medications may cause it. They always gave me tylenol and benadryl before starting each IVIG treatment. The benadryl is proven to cause fuzziness and it promotes sleep. It can cause alertness issues with persons—especiallly our age group. I am also on 3 meds for high blood pressure. One of them is the highest possible dose. Blood pressure meds can cause you to feel tired. On rare occasions I have forgotten to take my blood pressure meds and I have noticed that I feel more alert and have more energy when I forget to take them. I wish that I could stop taking all my meds, but I know that it is very important to keep my blood pressure down. I also do not take any prescription for pain. I manage the pain with tylenol and aleve. So I know that the problem with fuzziness is not due to pain meds….

I don’t care what any doctor says, I firmly believe that CIDP causes many of us to have what most of us here refer to as “brain fog.” I am 9 years out now (a very severe case) & the only med I am taking for CIDP is 1800 mg a day of neurontin, also a small dose of Zocor for cholesterol. Ever since I came down with CIDP I have been forgetting the names of simple objects, forgetting where I was going when conversing, sometimes even halfway through a sentence I can’t remember the rest, etc. I was 48 when I got this crap & was teaching English & math; now I can’t even remeber how to do most of the math I was teaching. My 86 year old mom’s memory is much better than mine…I believe it is the CIDP, & I don’t get any IVIG infusions or other treatments (had cytoxan back in 2003 to arrest the progression of the illness, it worked.) I wish doctors would listen to us more…

ditto on the brain fog. I think it’s the meds.
I had gbs in mar of 2010. 4 weeks in icu (I had to be intibated), I used to dream about water so bad! When I think of all the plots I planned to get water because nobody would give me anything for fear of choking.
I can remember training the nurse (through the abc board) to position me a certain way so when she fed me through the feeding tube, I would be able to taste the ensure as it went down! God bless the staff at SIUH!! After the icu, I went to the rehab unit for 3 wks., then went home.
By sept. ’10, I was walking on my own.
At the end of sept my husband, me and four dear friends, went to Italy! OMG, it was beautiful, we did so much walking, I didn’t gain a pound. The food was so good I still dream of it. Every meal we would be six people at the table and there was never a sound. That’s because we were so digging the food. With the help of my husband we climbed the top half of Mt. Vesuvius(?).
We made the plans before I became sick and I just didn’t want gbs to get in my way. I don’t regret going, but between that and the holidays the stress got to me and now I have problems with cidp (perifial neuropathy on my feet). I also have problems with numbness on my lower jaw, a tongue thats seems to big for my mouth and ringing in my ears.
I was getting these sensations that felt like I had bugs crawling up my chin going to my nose but now they’re gone. You really have to keep a sense of humor ’cause without it you might go mad!
Right now I’m getting intravenus immunoglobulin 42gms every 3 weeks and I’m taking 1200 mgs of neurotin per day. I tried to switch to lyrica but that really made me loopy. We’ll see how it goes. Thanks for the tip on vit. b’s and omega.I was taking them and did feel better but forgot after Italy. Good luck ro all and sorry I took so long.

[FONT=”Microsoft Sans Serif”]when i took neurontin, i felt very effected mentally… in fact, it is was made me stop and that is when i started with narcotics and and cymbalta (unfortunately, cymbalta, that is). perhaps everyone is different– but i felt the narcotics (hydrocodone) effected my ability to think much less than neurontin.

lately, as i prepare to return to work (as a police officer) — after 3 years! i find myself reviewing things like radio codes… our list of radio codes are almost like another language. in fact, cops who can’t break away from their persona as a cop, even talk in code while off duty– silly i know. anyway, to my surprise, i had forgotten many of the codes. well, not really forgotten, but they were buried somewhere deep in my brain under 3 years of illness and a million drugs including chemotherapy… it took going over them with sophie just a couple of times and they feel like second nature again. i was pleased to see two things: that my ability to learn was still present and that i could retain information. this disease had chipped away at my self confidence, undoubtedly.

having said that, i do appreciate that everyone is different. and if my friend pam h. says she feels cidp impacted her thinking– i trust her that it did– trust that she knows her own mind and body well enough and can reliably know what is happening. one very clear thing about cidp is how differently it effects each person… on that i doubt we could find disagreement.

on a different note– your mentioning living outside philly intrigued me for another reason. when i 1st joined this forum about 3 years ago, i noticed what seemed to me to be a disproportionate amount of folks from PA… if i had to pick a close 2nd, it would be michigan… now having said that i don’t mean to get anyone’s panties in an uproar– this is admittedly an unscientific observational comment about what appeared to be the case– but it did make me wonder.

i think i’ll start a thread on where everyone is from and where they live now. it would be fascinating to color in a map of the US/Canada according to cases of cidp/gbs- and then attempt to ascertain what industries may exist in the more densely populated areas… help me out with it won’t you?[/FONT]

[FONT=”Microsoft Sans Serif”]yes, 1st day tomorrow, bright and early![/FONT]

I just asked my Neuro at my last appointment about this “mouth” thing. I told him that ocassionally whenever I go to talk- It’s as if I get tougue tied and sort of slur a word. Sometimes it feels as though my tongue is rolling over. The words just won’t come out quickly and normally. I actually wonder if the person I’m talking to notices it. I slow down my speech hoping this helps. My Neuro said, “just don’t worry about it”. I also get a tingling deep inside of my ears at times and whenever I move my eyes to quickly – up and down, I get dizzy and I feel like I’m going to pass out. Doctor said the eye thing is from the sensory part of my CIDP but the itchy, tingly, ear thing is not related. I think it may be as often times when I get it, my face starts with the tingling too.

[FONT=”Microsoft Sans Serif”]as one of many preliminary tests done prior to original dx, i had an mri of my brain with contrast– have you too had one? they are looking for ms, i believe.

not to scare you– but some have ms too. just a thought.[/FONT]

[FONT=”Microsoft Sans Serif”]ok, glad you did– i guess that’s standard practice but you never know right?

i think too that simply having a life-changing illness will in and of itself cause a degree of stress to the psyche that may affect one’s focus– don’t you think? i know for me that i was very pre-occupied with my dx, in fact it was all i could think about for a long while…

thanks for asking about my 1st day back to work– yikes, it was a long one. up at 4:30– had to qualify at the range at 7:00 then to the academy for training– till 6:30 pm! six hours of the training was grappling, take-downs, hand-cuffing and the like… eh. but all went well and i had no problems– thanks 😉

i’ll sleep well tonight, and i hope you do too..[/FONT]

Alice,

Glad to hear that your first day back went well! That is so inspiring….I don’t know if you watch any TV, but there is a cop show called the “Good Guys” and Bradley Whitford’s character always says, “Let’s go bust some punks!” Hope you are having fun busting some punks… 🙂

During the 1st year after my daughter was dx’d with CIDP I noticed she would start to stutter while she was in a relapse. Once we got her CIDP under control with high doses of IVIG that stopped & she hasn’t had a problem with it in years.

Kelly

Hi all
I am 32 y old ( trained as a doctor) and just a week ago diagnosed with CIDP. I am on Azathioprine which has its own set of side effects. Although it may not be mentioned in medical text books but i am experiencing these symptoms of tongue locking or as if someone is stopping you forcefully to speak or sometimes it requires some extra effort to utter some words .
I got facial nerve palsy thrice during last 6 years and now my nerologist is attributing those to CIDP which was considered by doctors as Bell’s palsy and treated thrice by high dose steroids.
Whether there is any report of these symptoms in medical literature or not, these do happen. And at times i become frightened to think whether any of my cranial nerves are getting involved or its an early symptom of Pseudobulbar palsy which is a known manifestation of CIDP. If any one of my friends have some suggestion or any OTC remedy ,kindly reply.
Adnan
a frustrated freshman

Adnan – My daughter had cranial nerve involvement. You can request for your dr to order a MRI of your brain with & without contrast to see if they are affected.

Kelly

to your doc[s]? Why? Some docs consider us a bunch of crazies whining about it all on-line in some blog fashion or worse… Thing is, here, I believe each and every one of US has simply been sharing experiences that we’ve had ‘in common’! Tho not necessarily listed under any diagnostic category other than ‘OTHER’!
IF any good neuro worth their salt, read posts here? I do believe they’d be more sensitive to US and what we fear and often are afraid to ask, because we’ve been ‘blown off’ by prior docs w/the ‘Its all in your head’ line….end of subject! Well, yeah, it can be in our heads, and that’s what neuros who also ‘do heads’ are supposed to KNOW about?
Having had this quite a while now? Tho, not as long as the true veterans here… I learned from them and approached docs by saying: several people in more than one support group seem to demonstrate or feel the same symptoms and…are ignored. Please don’t ignore me? Given that challenge? You WILL get a promise of ‘getting back to you’. About 30% of the time, they actually do research about some aspect that ‘bugs’ them and while they don’t mention it? They do incorporate a concern or two into their treatments.
You can only ask and/or poke so much or soo far. YOU are not their only patient.
The soft sell is better at first than hitting them over the head w/a 2″x4″x6′!?
Or honey vs. vinegar etc.. As long as you get their thinking outside of one box and looking at the whole can you encourage broader thinking that gets a better approach to YOUR problems.
IF at the end of an appointment you want to scream? Get in your car and do it on the way home! It feels good…truly.
Yes, brain fuzzies can and do occur? It’s up to you to ask what other med choices there mite be that get your brain back, but also help w/pain. I always ask for a sample plus the prescription…so I can taper off old, try new and see IF the new is worse than the old. IF worse? 5-10days worth of samples should tell you if it’s a killer for you or not. Then? You’ve not wasted 30-90 days worth of pills! Also with the sample? I web up the dickens out of it about good bad and indifferent side effects! So I know what to expect. We are all different in our tolerances of meds. Heaven for you? Is purgatory or worse for me! Or, vice versa.
Good luck and let us all know? Please! Go forth and fight well.

brain fog – how familiar for years – ask my wife, I complained about it ages ago

it’s the CIDP
it’s the drugs (8 but no pain ones – knock on wood)
it’s the IVIG
it’s the Rituxan
it’s the alcohol
it’s the age (77)
it’s my atrial fibrilation (300/min)
it’s poor sleep
it’s wrong or not enough supplements
it’s my wife
it’s my grandkids (we live in an extended family)
it’s too much time on Facebook
it’s the weather (rain fronts, Washington state drizzle)

heck, I wished I knew

what I do know:

it gets better
when I had more and better sleep
had less to drink
the sun is shining

some of it I can influence, some not or very little
I enjoy every day when the fog has lifted some
😀

Brain fog? Definitely. I’ve been dealing with this CIDP relapse for 14 months now. I am down to 15 mg of prednisone on alternate days, 2000 mg cellcept each day, and ivig one day every other week.

In spite of the drugs, I’m convinced the reduced capacity to reason, remember, and articulate is coming from the disease. When I’m feeling better physically, my brain works better as well. It does not seem to relate to the medication levels.

This is all going to get better, right?!

🙂 Hi Wendy Louise, I been DX with CIDP and yes at times I do feel that I’ve lost something in my ability to express myself. However consider the stress we’re under and how little is understood concerning this disease. Many of us live with pain and the psychologically impact of constant relapse. That will go a long way to slowing you down a bit. I don’t believe it has anything to do with age, not in your case. You’re too young. It’s really an insidious condition, since as you improve there’s always the relapse waiting to happen. I think these things and too often the indifference of some doctors who don’t take the time to relate to our psychological needs (simply appearing compassionate) throws us back on ourselves with doubt and anxiety. You’d have to be super human not to feel a bit lost at times. But my scrabble score says no; my brain is still functioning. All the best.

yes, absolutely to brain fog and being tongue-tied. sometimes at work it’s almost embarrassing. other times, my memory is also problematic, i.e. searching for words, names, etc. that i’ve known for years and absolutely can’t recall. i find that i have to write things down much more than i had previousy did.

good morning to everyone, i am a mother with a child of cidp she is now almost 16 she was diagnosed when she was 11 unusual i know the statistics in children r rare but here we r we were glad to finally understand what was going on anyway i was reading all ur posts and i have a ? taylor my daughter is experiencing alot of ‘whiteouts’ as we call them meaning she could just be sitting there or standing either way and everything goes kinda white not like she is going to faint but just all fuzzed out and lightheaded and it takes a couple of minutes to clear up have any of u experienced that and if so what have ur doctors told u, they sent taylor to a cardio dr. and said if thats clear which it was it would be some sort of side affect she will have to live with i was just wondering, she recieves ivig but they r looking to put her on a different medication because they dont want to give her a portacath because of her age and her veins r now collapsing with the treatments if anyone has any insights that would be great…also wendy u said there might be a way to navigate thru here for ages i would love to know how maybe i can find someone around her age that she can talk to and will understand what she is going thru from a teen perspective thanks everyone for reading good luck to u all…..

Terri,

<<...they dont want to give her a portacath because of her age...>> There are several children whose mothers post here that have ports, younger than your daughter. I do not see why if they can have one, your daughter could not.

~MarkEns

welcome wendy, such good things are being discussed here! i was dx in 2009 w/cidp/anti-mag…started ivig till insurance stopped it 8 mths later, went down hill and after 6 mths i was walking with a cane and in tremendous pain. i got insurance to agree again to treatments and greatly improved but had to switch dr. due to insurance change. i know this sounds unbelievable but… after 6 mths of more treatments, i had just received a letter from insurance co. APPROVING me for another 6 mths and a port when my neuro called and said he was not going to approve my port or treatments!!!! MY DOCTOR!!
so i missed a treatment beacause he said he did not agree with 1st diag. i asked him what he thought i had and he said “fibromyalgia”. i guess after 6 mths he never bothered to read my blood test!!! he sure did know how much an ivig cost the ins. co.!! i fired him and lucky for me found a neuro just as knowledgable and kind as my 1st neuro. i WILL GET my infusion tommorrow.
i do have to say, this is the worst i have felt…ever…! i am so glad to hear others have brain fog. i’ll be in the middle of a sentence and totally loose my train of thought…..and i feel like if i taped my voice, i wouldn’t recognize it was me talking. after dr. A cancled out on me i had shoulder surgery for a torn rotator cuff in jan. which i am sure has contributed to my down-hill spiral. be careful out there wendy, get all the help and support you can get.
the people on this forum are the BEST. there are good docs out there who really do care!!! but BEWARE some have ego’s so big i’m surprised their heads don’t pop!!
god bless to you all
ms. judy
p.s. i will officially retire on 3-1-11 (from my job that is)

I SMILE BECAUSE I HAVE NO IDEA WHATS GOING ON

Yes, I have noticed this too. It seems hard to find words sometime, or I use the wrong word. It is so frustrating. Definetly not anything that happened to me prior to starting to get the CIDP symptoms.

I have been dealing w/CIDP for 22 yrs. I am 54 yrs old. My first attack was in 1989 and I had very little “brain fog” . my next major relapse was in 2001-2004. I was treated w/ IVIG the prednisone + plasmzx, plus dozens of other meds. I definitely experienced the “brain fog” and ‘tongue tied’ and short term memory problems, etc. I am currently in a third relapse.

In my experience CIDP alone can cause these symptoms. I also believe that the various treatments and drugs are contributory to these same symptoms. Once I plataued my recovery in 2005 and stopped all the meds I recovered most of the “brain” issues but I have to say I had some residual effects with short term memory for a couple more years.

The main thing I would tell you from your post is this. Do not let your Doctor disuade you from believing that your CIDP is not the cause of your brain fog. CIDP is very rare and displays itself very differently in various patients. Unless yor doc is one of the leading dozen or so nuerologists in the U.S. I think it is irresponsible for him/her to rule out anything related to CIDP.

I have been seen by 15-20 different Nueros on the west coast from UCSD, UCLA, Univ Seattle Med. plus many private practice nueros. Most have inflated egos and some are just too lazy to give 100% advocacy for you and knuckle down and study on your behalf. Most don’t do enough referencing to other nueros that are familiar w/ CIDP. You need to be your number one advocate. Ask your Doc exactly how many patients they have had that have had CIDP. If the answer is ‘NONE’ then I would consider getting a new nuero, one that has experience w/ CIDP. if not, I would TELL them they need to do the research. Always have a prepared list of questions every time you go to see them. Make sure they answer them. Make a copy for them and leave it with them if necessary and make sure they do there homework! Do not be passive. If you don’t think your getting 100% then go over their heads. Keep the pressure on and you will find the ‘squeeky wheel gets the grease’.

22 years with CIDP believe me, I have been through everything related to this terrible affliction.