How bad will CIDP get?

    • Anonymous
      May 1, 2008 at 5:28 pm

      It has been a while since I have been to this forum. Since I have been here we have been some very hard times. My main concern is my husband’s CIDP.
      He has gotten worse within the past few months. He has alot of pain and I know this goes along with it and he has lostalot of muscle strength in his legs, more than I had realized. His twitching and cramps are movoing up to his arms and we are very nervous over this. He is dropping and knocking things over all the time. My main concern is his mind is very bad, he forgets constantly, he seems to be in a sort of “fog” all the time. My mother has seen this too, sometimes he is soo bad that we have to watch over him.

      Everytime we tell the neurologist all she says that this is part of the disease and we have to live with it. She states that his memory problems are his medicine. What kind of meds are ya taking? He is on Diliatin and Lyrica. He has tried the IVIG but had a severe reaction and can no longer take them.

      Another question, he has been diabled since last yr and we have filed for SSI and disabilty and have gotten denied 2times, now we are waiting for a hearing and it could take up to 2 years for a hearing. How long did it take for ya to get your disabilty.

      Sorry for so long, thanks ahead of time for all the responses.

    • May 1, 2008 at 7:06 pm

      You do not mention if your husband is currently on ivig. If he is, maybe he needs more or additional medication (steroids, cell cept, pp etc.) If he is not, he should be. Brain fog is a very interensting topic, docs say it does not happen from gbs/cidp, we, well some, on the site, myslef included, disagree. Did you mention he is on Lyrica? That and other drugs can contribute to the problem. I wonder if depression or fatigue or lack of sleep are a large part of the problem. My son seems to be ok memory wise when he is not sad, or tired, who knows! Good luck!!
      Dawn Kevies mom

    • May 1, 2008 at 7:13 pm

      Since ivig was an issue the first time, give it another try. There are many things that can aid in the infussion going better. We too had issues and now get it once a month with 75% better results. Slow flo rates, liquid vs. powder, brand change, pre meds, all make a difference. Steroids and pp are options as well. As long as basic blood work has been done to check the Igg levels ( the acronyms are probably wrong, some one will be along to correct them for me and make the proper small, capitol g’s, but igg levels are what you are looking for) and they are ok to receive ivig, then it is all about the administration. It has taken us about 15 months of trial and error to get where we are now, but I KNOW Kevin would never give up playing like a regular little boy again as opposed to the reactions to the ivig.
      Dawn Kevies mom

    • Anonymous
      May 2, 2008 at 6:50 am

      He has gotten worse within the past few months. He has alot of pain and I know this goes along with it and he has lostalot of muscle strength in his legs, more than I had realized. His twitching and cramps are movoing up to his arms and we are very nervous over this. He is dropping and knocking things over all the time. My main concern is his mind is very bad, he forgets constantly, he seems to be in a sort of “fog” all the time. My mother has seen this too, sometimes he is soo bad that we have to watch over him.

      Wow – you could have ripped a page right out of my diary last year. He definately needs some kind of treatment other than just dealing with the symptoms. As Dawn says IVIg may still be an option, I had some allergic reactions to it, I’ve had meningitis from it, and it’s still the BEST option for me and I’m getting better from it, we just deal with the side effects as they come. If his problems with IVIg are too severe then you should at least consider plasmapheresis or one of the other options like steriods.

      Twitching, dropping things, bumping into things, cramps, etc. all these things point to me that his nerves are not healed and may still be under attack. As frustrating as it is for you I’m sure it’s twice as bad for him. I can’t tell you how many of my favorite coffee mugs I broke because I insisted on doing things myself and just lost my grip on it. Or ran into a wall and got a black eye because I lost my balance at precisely the wrong time. It’s annoying, I know, and it means he isn’t healed yet, needs more rest, and possibly treatment as well.

      OK on to the brain fog – YES this is/was a huge problem for me that has finally started to get better. I do not take any medications other than IVIg so it’s not because of Lyrica or any other drug that my brain took a vacation. My husband and I were concerned I’d be impaired my whole life too but I am finally getting better in that regards, don’t space out nearly so much, I remember more things now though my husband still has to call and remind me to eat occasionaly. Yes it is VERY scary, it was very scary for me too going through the worst of it. I knew there was something wrong but I just couldn’t make my brain work right. I felt very guilty that I’d forget things all the time, too scared to tell anyone about the worst of it though I’m sure my husband knew. I don’t know whether time or the IVIg treatments have been the main factor in the return of my brain but I am sure the IVIg had something to do with it. It’s like you can’t think when your body is busy trying to rebuild nerves and when I was at my sickest my brain got the very last of my energy after it was parceled out to everywhere else first. This is one of the reasons I’m suggesting you find a treatment that allows his nerves to begin healing, rather than just treating the symptoms.

      You all should probably think about way to deal with the memory problems as they may be around for awhile. It was two years before my husband and I started noticing a difference and I started remembering things better. One of the best things you can probably do to help him out is come up with a routine so that he doesn’t have to remember what needs doing and write stuff down in a place where he sees it (for me that’s the fridge). Though I still can’t actually remember stuff on my own I do now remember to write them down on my fridge notes and I remember to read the fridge notes too. If we have an event coming up my husband reminds me two weeks before, a week before, two days before, the day before and then several times on the day of the event because I might just wake up that morning and not remember despite a thousand reminders from my husband. It IS like being in a fog, living from moment to moment. Have some patience, it did eventually get better for me and though I’ve got more progress to make I’m confident now that my brain hasn’t dissolved into a puddle of mush, it was just on vacation for awhile.

      Good luck and keep us posted,


    • Anonymous
      May 2, 2008 at 10:27 am

      This is a funny about the brain fog! Last night we needed a flashlight and I said “Oh I have one in the car” Went out to get it and came back with a measuring tape. Proudly handed it to my friend who looked at me like,”Helllllloooo???”. I looked down and realized I have never had a flashlight in my car and who knows why I said I did! But yes, brain fog is a problem, but has gotten better for me with time and writing lots of notes and hoping I remember to read the notes:)

    • Anonymous
      May 2, 2008 at 10:46 am

      Boy, I can relate to this. Yes, I too have been having brain fog lately – forgetting, just not feeling right, etc. I too have lost lots of leg strenght and have to use a cane most of the time. Feelings in hands is almost gone as well. I tried ivig and prednisone – both with no success. Next Tuesday I am scheduled for P/E and hopefully that will do the trick. As for meds – right now I am on Prednisone (but tapering off) at 50 mgs a day (dropping 10 mgs every 3rd day), 25 mgs of coreg a day for heart failure, and 160 mgs of Diovan for high blood pressure and a baby aspirin a day.

      Good Luck – I sure hope things turn around for your husband. I know this is killing me to be this way.


    • Anonymous
      May 2, 2008 at 11:02 am

      Thank you so much for all the replys. His neurologist will not let him do any more IVIG treatments she has mentioned about the plasma, but nothing has come of it yet. I have thought about finding another neurologist, have any of ya changed doctors before?
      I will be more patient with him on his memory lost, and I have tried to help him with a routine and told him to rest more but he can’t because of all the pain he stays figitity all the time. Especially when we are at Church or where he has to sit still for a time.
      Thanks for answering my questions, I think this board is going to help us cope with everything.

    • Anonymous
      May 2, 2008 at 11:22 am

      Your husband sounds a lot like me. I had five tsx of IVIG and they did nothing for me.
      Now on my second round of Plasmaphresis, plus remain on Prednisone, and Cellcept.
      Pbresis gave me twenty very good days. Didn’t get to throw my walker away, however, I walked better, was stronger, and the brain fog lifted.
      Hang in there and keep praying, all any of us can do.

    • May 2, 2008 at 11:28 am

      We had three docs before we met our current angel on earth. He was the only one that made the correct dx and has been wise in directing us to continue with the loading doses of ivig despite our reactions. The reactions have improved significantly and so has my sons physical well being via ivig. You will know when you have found the right doc for you. Don’t give up on the ivig yet. REACTIONS do get better (providid your blood work indicates you can tolerate it) Best wishes,
      Dawn Kevies mom

    • Anonymous
      May 3, 2008 at 1:58 am

      I had severe reactions to IVIG but it did get much better. The first year I had 40 grams a day till was able to do the whole 50 grams.Went from 5% solution to 10%-same amount overall but goes in better. I now have a bag of fluids given at the same time and that too has helped as I get SOO dehydrated. I continue to take Benadryl and Tylenol every 6 hours for a few days after my 3 days of IVIG to cut down on the side effects.When it was so bad I had IV predisone with fliuds the same day or had to come back in for it- made me feel better.
      I knew I couldn’t due prednisone and PP before I gave 2-3 months to trying IVIG.
      Your doctor needs to start your husband on something-I don’t understand why she isn’t helping him.
      My brain fog is from being so tired-I was so tired I didn’t realize it because the pain was a number 10 plus. When this happens I tend to trip over my own feet or drop things.
      The IVIG made me able to no longer need 2 forearm crutches to walk. This evening I took a little stroll around the neighborhood on my 2 two feet-a little wobbly but I did it. This month is my third year on IVIG .
      Good luck.

    • Anonymous
      May 4, 2008 at 12:12 pm

      Hello Chelle,
      Don’t be afraid to see another doctor. I went through eight neurologists. The first three thought I was a hopeless case and treatments would be wasted. I couldn’t accept that when they wouldn’t even try them. Two other neurologists saw me once and didn’t want to see me anymore. Number SIX was my best highly qualified keeper doctor. Two more were just for consultation. A doctor who wants to do his best to help, will not object to seeing another doctor.

      IVIG’s have different brands and/or strains which can cause severe reactions, so find out from the doctor or infusion nurse what strain/brand your husband had and try another kind. Use your google search engine and put in cidpusa. This site explains very well about IVIG’s.

    • Anonymous
      May 5, 2008 at 1:21 am

      I am glad that others find that their cognitive function has been reduced…I ended up having to “retire” from my profession because I was not able to do all the things that I had done for so many years. It was by far the hardest thing I have ever had to do.

      Before I left work, I had a cognitive functioning test at the hospital. The result was that while all the bits were intact, my memory was poor, and my ability to do chain logic (more than one transaction at a time – sorry – I can’t remember the proper name of it!!) in my head was severely reduced. The technician also said that it was very obvious that fatigue was a big part of the problem – even though the test was first thing in the day, it was clear that I was struggling with it after only about 30 minutes.

      Now, I work 10 hours a week and have disability to top it up. I tried to up my hours at one point, but I couldn’t mentally keep up. All my docs (including the pain specialist) insist that it is the medication talking. I have IVIg 2 days a month, take Gapabentin, Tramadol (an opiate), and Efexor. The fog has been a problem for about 3 years now.

      No matter what the cause, it is VERY frustrating. It is heartening to hear that it might improve over time.


    • Anonymous
      May 5, 2008 at 4:04 am

      Hi there Deb, just to add that i have to also admit i am not as sharp mentally pre onset of CIDP. Feels like bad nappy brain so to speak, am currently trying to get back to work (nurse) and hope increasing hours slowly over time is going to be the answer. again mornings definately are the est but after concentrating for 2 hours non stop is when the fog creeps in.
      can only keep trying though eh????????
      catch ya

      Kiwi chick CIDP May 07
      Kia kaha
      Napier NZ

    • Anonymous
      May 5, 2008 at 5:39 pm

      The years 2005 and 2006 were a blur to me. Nortryptillin and neurontin made me a zombie.
      I’d push for an MRI and maybe get some second and third opinions on top of checking all the meds he’s on for side effects.

    • Anonymous
      May 5, 2008 at 9:08 pm

      Memory was not a big problem for me after GBS (possibly a bit but not a concernable amount) but since starting on Gabapentin, it is awful. ๐Ÿ˜ฎ I lose words, thoughts, etc and really struggle some days at work just to get the words out. My job involves a lot of lecture so I too worry that it may cost me my job.

      I do know it is worse when I am tired or not feeling well. ๐Ÿ™ I keep pushing through it and have been hoping as I adjust to the meds my memory would improve but that doesn’t seem to be the case. So…is the memory loss drug related for the rest of you? I don’t know but I can appreciate your struggles!

    • Anonymous
      May 6, 2008 at 11:32 pm

      Before I came down with CIDP in 2002, I prided myself on my memory & my mind in general. I was teaching high English & math in the upper grades, as well as totally controlling every aspect of our household & children’s lives. Helping them to pick their college schedules, managing their rent, tuition, etc. Right when I got hit I was immediately put on 3600 mg of neurontin a day, as I had extensive nerve damage from the beginning. I have always wondered if my memory problems are from the neurontin, the CIDP, or just the fatigue I battle daily. But switching to Lyrica would not really help me out, & I can’t imagine what my life would be like without neurontin; unbearable, I am sure.

      But the question originally asked on this thread was “How bad can CIDP get?” My answer is it can get very bad, especially if left untreated. Even though I had treatments when I just had some numbness on the bottom of my feet & my hands (I could still walk & my hands were working OK then) I still deteriorated to quad status. I woke up one morning, just a few weeks after getting 5 PP treatments, unable to walk at all, couldn’t lift my arms up, & had virtually no use of my hands. I would remain this way for over two years, & still suffer from a poor recovery. That was after many IVIGs (over 40) weekly & also weekly solumedrol. So I advise you to get treatment for your husband ASAP, as one can go downhill very rapidly with this illness.

    • Anonymous
      May 7, 2008 at 4:47 am

      I just want to repeat that I am not taking ANY other drugs EXCEPT IVIg and I still have memory problems… so while I’m sure the Lyrica and Gabepentin are contributing to the problem, they might not be the only source of confusion.

    • Anonymous
      May 7, 2008 at 7:13 am

      I know that many of us can be worse within a few days , weeks or months. What really scares me is what the next ten years will bring. I’m not 40 yet and I walk like a little old woman. I barely make it up the stairs at home somedays.
      I am very grateful that I AM able to make it…right now…but then what.
      I take no treatments right now, my changes are very subtle.
      I am in line for another opinion on the 19th…


    • Anonymous
      May 9, 2008 at 10:30 pm

      [FONT=”Book Antiqua”][SIZE=”1″]Oh my! I haven’t been on this website for awhile but your husband’s story is eerily similar to mine…..

      Twitching has always been one of my main symptoms but it isn’t usually found in CIDP patients. I also have extremely weakened and severely atrophied leg muscles. Falling is not uncommon for me so I must use a cane at all times.

      The brain fog is whacky – but I attribute it to the meds that I must take. I constantly forget my assistant’s names at work, unable to remember why I walked across the room, etc.

      And, IVIG worked for me initially but then developed a full body rash. Uck. So, I was on plasma for 2-1/2 years. Then my neuro decided to attempt IVIG again and this time it was a newer brand that was available plus I was given a steroid at each treatment and this helps to prevent a rash. It’s now been working for me for almost 3 years with only an occasional rash spot. Also, I’ve been on cellcept for two years.

      Does your neuro indicate any knowledge of these other options? I feel fairly stabilized now even though the twitching and weakness are slowly getting worse.

      There are many options and combinations that are available. If you aren’t feeling like you are getting everything that you can from your neuro then it’s ok to look for a second opinion.

      Are you near New York City? I know some incredibly gifted and enlighted neurologists.



    • Anonymous
      May 10, 2008 at 7:32 am


      lyrica and gabapentin(neuronitn) are basically the same drug. It is true that after starting these drugs a period of “adjustment” is needed. I was also dizzy, foggy, and out of it until my body got accustomed to the drug regimen. It took several months. I don’t know if your situation is the same, but it could be.

      as to the disability issue, everyone is different, and a diagnosis of CIDP is not an automatic YES for disability. In fact it can be a pain in the butt to get it approved. The b iggest two questions are Can he work now? and Will he be able to work in any gainful activity for at least the next 12 months. It is a hassle to get through all of the forms, but if you qualify, you deserve the benefit.

      Good luck
      Dick S

    • Anonymous
      May 12, 2008 at 10:23 pm

      This is my 2 cents on brain fog. I know some medications can make a person feel this way, but absent pharmapceutical reasons this is my theory.

      I think that when something tramatic (like being diagnosed with CIDP, death of a very close relative, ect…) happens to a person, a whole new set of ideas, terminology, perspective, life changes, physical limitations, ect… are imposed on a person. When this happens many things are simply pushed to the side and things try to prioritize in your head. During this process somethings are just lost or not as readily accessible in your memory.

      Think of a stressfull event where you were not able to think of anything else but this event. Then it went away after a few days or weeks or months. CHRONIC is the first word in the description of CIDP. Now this event is consuming you daily for years NOT days or weeks. Thus the small things that your were able to keep straight in your mind are on the back burner every day.

      I hope this makes sense.


    • Anonymous
      May 13, 2008 at 10:36 am


      There is truth to your theory. If you study trauma services at all, you will find that any significant event in life alters our abilities to process and retain information. So yes, meds do play a part for some folks, but also the assault on the body by illness is traumatic. The brain will filter out the things that are not important so we can focus on the things that are…and getting well in one thing we all need to focus on!

      Most of you have said this so I just want to reinforce it. There are ways to help ourselves with memory by using aids. Keep a diary, get a day planner, post sticky notes around the house, and for me…I am upfront with people and tell them that I have “Swiss Cheese Brain”. I tell them I have these craters where all the info falls and I can’t remember what crater I dumped it in so cut me some slack, and let me go crater hopping until I find what I am looking for! Most people laugh and just the lightening of the moment relaxes me enough to be able to seek what I can’t find.

      I feel like a mountain climber some days….up and down the valleys. I also started doing things that challenge me to use my brain…I love Sudoku, crossword puzzles, and reading. It keeps me on the ball and keeps the old neurons firing! Find what works for you and well, laugh at yourself and others will laugh with you. It’s gotten me out of some tight spots!

    • Anonymous
      May 14, 2008 at 4:31 am

      That’s EXACTLY what I think is going on. I do realize there are thousands of other things that can contribute to brain fog but as I’ve said before – my brain gets the very last of my energy after it’s all been parcelled out elsewhere to the constant battle of demyelination vs. myelination. Some days there isn’t much energy left so I don’t think very well, other days I feel better so I think better. Thanks… good explanation… my brain isn’t working too well right now – got meningitis again which doesn’t help with the brain fog either. :rolleyes:


    • Anonymous
      May 14, 2008 at 7:30 am

      I get brain fog from system overload….at least that’s what I try to blame it on. Way too much going on. At work they are screwing me…been here 17 years and I can retire in 13 more at the age of 50 with full benefits. That’s the only reason I am sticking it out.
      I have to cover for someone who is on leave…that calls in all the time…and my work suffers b/c of it.
      oh well.

      Julie, do you get meningitis alot ? I had it before i ever had CIDP and was taken to the ER and admitted for a week. I couldnt open my eyes or turn my head and all I did was sleep. It was awful. Then I got the IVIG meningitis the first time I did treatment…did four days and couldnt go for the 5th.
      That wasnt as bad as when I went in to the hospital…but it was bad and if you get that frequently…no wonder you have brain fog.
      Isnt there anything they can do to prevent that for certain ?

      well, I need to get some work done…leaving in a bit to go to Connor’s music program. It’s his last day of pre-school today. He’s such a stud. ๐Ÿ™‚

      have a great day everyone.

    • Anonymous
      May 14, 2008 at 12:36 pm

      How helpful these comments have been. I also noticed my husband seems to forget but did not know why. As usual I am going to copy a couple of these for him so he does not think he is just losing it. I do not have cidp but I still have to write sitcky notes because I am trying to do so much and need to keep things straight.
      After 4 weeks on ivig we both noticed that he started falling again and became weaker. Could feel his legs move in bed which meant he also could not stay still long enough to sleep. He also was told by a eye doctor that he thought his balance was from vertigo. But his neurologist said it was from a artery when he lifts his head it cuts off cirulation and makes him dizzy. Had two more weeks to go before another ivig. – this is the day and he insisted he could go by himself.
      So now he needs to get an mri but doctor said check with family doctor first to see if he already had one. Well it has been 2 weeks and he is just now calling the neuro to ask for a prescription to get an mri as he did not have one before(must have had one from a previous neuro he does not now see) Any way he seems to put off things alot l This is just one out of many things I keep haveing to push him to do. I thought he just did not care or depressed.

      I think depression has alot to do with it as I feel overwelmed sometimes myself.I thought if he had something to do it would help him to keep his brain active. Any comments.

    • Anonymous
      May 14, 2008 at 12:51 pm

      Hey Joan F, I’m thinking my wife goes thru alot of the same things you are talking about… She is doing her best to keep my spirits up, but it still takes its toll.. I had/have issues I liken to vertigo. I went thru a battery of tests with ear, nose throat specialists to see if inner ear problems…In the end they found nothing obvious, and I guess attribute it to weakness issues I’m having.. In a way, I think they are correct…Does your husband happen to notice worse vertigo in the later stages after ivig treatment. I’m on about 30 days post ivig, and am feeling numbness/vertigo/and burning…yet, my strength is still holding…I hope some of this helps you to relate..take care deanop gbs 10/07, now cidp diagnosed, ongoing but still improving…

    • Anonymous
      May 16, 2008 at 3:26 am

      Julie, do you get meningitis alot ? [/QUOTE]

      Apparently… four out of the last five treatments I’ve gotten it. It lasts anywhere from a week to three weeks. Since I get treatments every three weeks it’s kind of variable how many good days I’ll have per month. It’s tolerable if I stay in a dark room; don’t try to read, watch TV, or use the computer. Not every day is that bad tho. I go to the Neuro today so we’ll discuss the meningitis again. He called last week to say my blood tests show an autoimmune attack on my thyroid. So now I have hypothyroidism-yet another reason for brain fog. However the hypothyroidism is very recent so not the original cause, or the only cause of the brain fog. At least hypothyroidism is easily treated and hopefully I’ll have more energy (and hair! It’s rapidly falling out!!!)

      Joan, you can try that but it might be frustrating for you both if you put him in charge of something crucial. I started small and stupid and worked my way up to my current level of complexity. I started by alphabetizing our video collection and worked my way up to grocery lists and appointments. I still frequently forget to make appts. and I assume there is a psychological reason for it based on the fact that I’m sick of being sick- sick of going to the doctor etc. ๐Ÿ™‚

      Take care, Julie