The statistics everyone used to give on the old form (honestly not true that they remain the same today,) is that 60% of people dx with CIDP have the relapsing remitting form which reacts very favorable to IVIG. From the speed of your onset, you most likely have this form. The slow progressive form usually (the other 40%) comes on over many months, or even years, & IVIG is not as effective for that type. You might just find most, if not all of your symptoms disappear after getting your IVIG infusion. You might be left with some fatigue as your most serious symptom, then get more sleep or rest.

Not everyone fits into one of these catagories, I had my CIDP come on very quickly, & was hit very hard. But then Mayo said I was one of the worst cases they had ever seen. I wish I had been one who responded to IVIG, as I lost all of my sports & still miss them even after almost 10 years. But I guess I accepted that a long time ago, can enjoy watching others skate, play tennis, downhill ski, etc. knowing that once upon a time I was pretty darn good at those sports myself. Besides, I am a grandma now!

I am only on 25 grams of IVIG every ten days, no other treatment. I have been on IVIG for almost 2 years. I have 2 neurologists and they have not suggested any other treatment. I think because I did very well on IVIG. But lately, I don’t feel as well as I did before. I get this fluctuating weakness in my legs. It’s like my thighs feel somewhat “numbish” even though the strength in my legs are okay. Sometimes, it’s hard to explain how I feel to my doctor. Do some people get immune to IVIG? I hope it doesn’t stop working for me. I am going to start taking vit. B12; even though my level was 291; within normal limits. Thanks for your input.

If one’s symptoms are very slow in progression (possibly even a matter of years,) I can see where a dx would be difficult. But many are originally dx with GBS & when the improvement hasn’t begun after 8 weeks or so, then the dx is changed to CIDP. That was the case with me. Originally dx with GBS on April 2, 2002, & basically bedridden by the end of April, I was rediagnosed with CIDP by the middle of May that year. But I was inpatient at Mayo & had had every test known to man performed to rule out any other possible illness. Wish I had had a milder case than I did, but I got hit very quickly & very hard…

Your neuro is so right about those who are doing really well with their CIDP not coming to any forums. It’s just like the product reviews we read on the internet, more likely to hear from those who had a bad experience, than from those who love the product. And he is probably right on his numbers as well, so I do believe you should be happy that you seem to have a milder form & go on living your life. Definitely keep seeing your doctor & getting treatments, but think about your symptoms at this point as “mild annoyances.” Best of luck to you in doing so…

Thank you, I have good days & bad days, but learned a long time ago that complaining to my poor hubbie, family or friends does not make it better; just makes them feel worse. I have also seen many in my age group hit with a myriad of autoimmune illnesses & cancer, so oftentimes CIDP doesn’t look all that bad to me. My best friend was just dx with Parkinson’s at 57, I suspected she has had something for a few years now. Left hand isn’t working right, drags one leg, slight tremors. This is one I don’t want… Also know some people with very bad cases of MS, & there isn’t anything that will make them any better. Sometimes when you put it all into perspective, CIDP desn’t look all that bad, even for those of us who got hit the worst.

It is possible that your previous GBS has turned into CIDP, but normally there wouldn’t be 7 years in between. There are a small percentage of people, like 5%, who do get GBS again after they are well. Either way, you need treatment ASAP, starting with IVIG infusions. Your doctors sound like uncaring idiots, & I hope you get to another medical facility & get correctly dx & treated. Would they treat their wives/children/parents the way they treated you? I think not!

In general, CIDP usually presents symmetrically, if one foot is numb the other is numb. Begins in feet and/or hands & proceeds in an ascending fashion (up the legs or up the arms), with loss of feeling & motor function. Reflexes usually absent. These are just generic symtoms as to how it usually begins, one must have an EMG & spinal tap for a more definitive dx. They used to also give sural nerve biopsies routinely, but not so much anymore. Your symtoms are so varried, leads me to think maybe something else might be going on?

Check your email & please call me some time tomorrow. I believe you will find a treatment, but in the meantime, you both need some more outside help. When I was in that condition I had to be in the hospital to be taken care of…

Chelle,
Don’t be afraid to try to find another neurologist. I went through 9 neuro’s, two were just for consultations. Neurologist #6 was my great keeper. One neurologist told me nothing but physical therapy could be done and that I was hopeless. Another told me IVIG shouldn’t be tried because insurance wouldn’t cover it, but what he really meant was that if I couldn’t afford to pay him, he wouldn’t get anything. I insisted that IVIG be tried because how could you say it won’t work when you don’t even try.

Talk VERY STRONGLY and VERY FIRMLY to a doctor and INSIST that a treatment be started and kept on a maintenance to CONTROL the progression.

Hello Chelle,
I think you and your husband should look into IVIG’s again and find out if something (like limekat said) can be done about the allergic reactions because if it’s possible, when you need something you have to learn to tolerate what it does to you. Without the treatments like IVIG and PP (plasma pheresis) you’re not doing anything to CONTROL progression. And you should talk to the neurologist and try PP (plasma pheresis) or another treatment that will control progression. Pain pills will not do that. I have medicare and medicare paid for my IVIG’s (secondary insurance picked up what they didn’t pay), no out of pocket cost. If your husband tries to find out if he can work through the IVIG’s or PP is better, I don’t think you’ll have to worry about what’s life threatening.
Fatigue is a very big part of CIDP and we just live with it the best we can. I would only worry about fatigue if it became so severe you had no quality of life.
I would get to an ER ASAP if I could no longer raise myself up to a standing position and had to crawl to phone. If I no longer had the strength to turn over in bed or get myself out of bed. Or if I started having falls again where my legs buckle. Falls due to doing something stupid are just part of life.

CIDP has taught the quiet introverted mouse (ME) to roar like a lion. I have learned how to be my own advocate. I live in a life care retirement community and I battled for two years with letters and speaking out to get this community to provide a bus with a wheelchair lift for people like me who can live independently (I am wheelchair dependent). THEY STARTED RUNNING A MINI BUS ON JUNE 23rd.

My next battle is a walk through gate that opens up to a shopping center that a joins the retirement community. I can go over to the shopping center in my power wheelchair IF I can get maintenance to fix the gate the way I need it to work.

I would wait the few days unless you begin to experience increased numbness, diminishing strength in your limbs, or possibly difficulty breathing. I know you had a mild case of GBS, but the symptoms you describe can very well be residuals to the GBS. Often people can take 1-3 years before symptoms of GBS truly bgin to disappear. For the cramping take a tsp. of regular mustard, trust me it actually works: immediately. I can’t help you with the fatigue, all of us seem to be left with that as a residual.

I was just wondering how you were dx with CIDP? Did they do a lumber puncture/spinal tap & did it show elevated protein levels? Did they do a sural nerve biopsy on your ankle to show the “onion bulb” destruction? Because if the dx of CIDP is correct, then prednisone should have given you some strength back, not messed you up. It was wrong to give that amount of steroids to a diabetic, however. I believe if you are worse since you took them, it is probably just the normal progression of the illness. And IVIG doesn’t work for everyone, if I remember right, it works for like 60% of people with CIDP (those who have the relapsing/remitting form.) Those of us with the progressive form often have to try a more drastic treatment program to arrest the CIDP, I know I had to. I hope you get a neuro this time willing to go for a treatment plan that will actually work for you…
Blessings, Pam

I was just wondering if you checked & read the Private Message (PM) that I sent you. Just wanted to let you know that it might be time to check into some alternative treatments, as you are so very young.
Pam

The fact that your father is still getting worse, makes me wonder if it isn’t CIDP? He should go back in for a loading dose of IVIG & if that doesn’t work, consider solumedrol infusions or plasmaphersis. The longer he waits, the more damage he will sustain, & some could be permanent. Why doesn’t he want to go out in a wheelchair, most of us on here have done that, it’s not that uncommon; I don’t understand…

Gary,
I regret that you have this crummy illness. I was diagnosed in 1999 and have fought it ever since. I have gone from prednisone treatment(Idon’t recommend that due to side effects) to plasmophorises to several rounds of IVIG. The first rounds of IVIG did not do much good. I think it was because they were given over a one day once a month period. I am now taking treatments spaced over several days once a month and am slowly recovering some of my lost strength.

This is the first glimmer of hope I have had in 11 years of CIDP. maybe one day I can get out of this wheelchair and walk like a normal human being.

Good luck to you and I pray that you have better results than I have had
Lea

Jeff has some very good advice. There are some new techniques going on that I have read about where they are giving TWO loading doses of ivig to GBS patients as protocol has always been just to give one. Sometimes people need two to stop that initial attack. Also, I am shocked that a doctor would deny you a treatment based on the cost. I have a hard time believing that one tx of ivig would be $20,000 unless you are a huge man and even if it did , you should receive that best tx possible.

i have cidp since 2005 been on ivig since then every six weeks .a lot of musucle wasteing not to mention weakness.i just started on rituxan,so its a wait see situation

When I knew I was stable with CIDP I went to a highly qualified doctor who treated GBS/CIDP for a consultation so that my neurologist would have feedback from him before I was withdrawn from treatments. This consulting doctor said that my neurologist should look into the possibility that I “burned out” he did not use the term remission. I am a realistic person, so I think in the terms that I have been in a remission for seven years, but since I have remained stable without treatments, have shown no signs of progression returning or relapsing, yes I do wonder if CIDP is gone. But then, can my CIDP be cured when I have been left with heavy residual damage. I don’t know.

MS attacks the central nervous system, CIDP attacks the peripheral nervous system, but both destroy or at least damage the nerves. If this drug can arrest the destruction of nerves for patients with MS, I don’t know why it couldn’t at least be tried by those with CIDP. I know it wouldn’t work for me, because the damage I have as residuals is due to destroyed nerves, but for most of you here on the Forum?

If your husband does have CIDP, assuming it is the relapsing/remitting form, you might find that with regular IVIG treatments, he might improve rapidly. If it is the progressive form, IVIG might just halt the progression & he could still improve. What he desperately needs is some kind of treatment for this illness. Keep us posted as to the actual dx after he has seen a neuro. Good luck to you both, this is not a kind illness, but he could have much worse.

Mr Perry had GBS last June and the article today called this “chronic inflammatory” as did a couple other articles–making me wonder if it is GBS that he has still. One newspaper article on line even said that this is now CIDP he is facing. He was hospitalized the first time for 5 months. He is hospitalized now for “complications” of the “chronic inflammatory” illness. It is sad to think that this is likely CIDP, but I hope he gets treatment and gets better.
WithHope

It is unusual to have two separate processes and this is probably part of the reason that one of Selah’s doctors said that she has her own unique autoimmune disease. Arthritis from Fifth disease is a reactive arthritis and people do get better. People with GBS also get better–slowly. I am sure everyone hopes that this not an ongoing autoimmune process for Selah, but what you say they say–that four months into this raises the concern that this is CIDP has two sides. It may bring sadness that this might be ongoing, but, on an extremely important other hand–CIDP can get better IF TREATED. If they are really talking about CIDP–push for more IV IgG. If she gets lots better at least you know that there is a rainbow at the end of the rain. More rain may fall and obscure it again periodically, but CIDP is a treatable disease if people are aggressive enough (and if the person responds to the treatment which Selah did). GBS is often a “watch and wait” diagnosis (after initial treatment) because it is typically an “one-time” event. CIDP is a call to arms for treatment because there is ongoing damage occuring.

Methotrexate is used for CIDP as well as rheumatologic processes, but for CIDP it is slow to act. Immunoglobulin works faster and better for CIDP and it has shown effectiveness in Selah. It should not worsen a rheumatoid-type arthritis.

I also sent you a private message yesterday. The most important point was encouragement to push to get Selah back to walking. The purpose of treatment is to limit long term damage to nerves and joints and muscles, etc. Immunoglobulin is not a cure for CIDP, but it helps stop additional damage to nerves. Methotrexate may make the immune system behave–but it takes a while with need for a lot of patience and luck to choose and modify doses just in the right pattern for each individual to be both effective and safe. While people wait for methotrexate to work on CIDP, there is additional damage to nerves.

WithHope

Hello Kathi,
I just wanted to give my opinion on something that I can relate to. I actually went through nine neurologists, two were for consultations and some I just didn’t accept what they were telling. The first three neurologists that I went to told me that I had no hope. The only thing to try was intensive physical therapy. They told me IVIG’S or other treatments would be useless and should not be done. My first consulting doctor, highly qualified in CIDP told me it was never too late. I didn’t like what neurologist #1, #2 and #3 told me, that’s when I joined this forum to talk to my people (who feel what I feel). How could those doctors tell me IVIG’S and other treatments wouldn’t work unless they were at least tried. Neurologist #6 was my treating doctor and my keeper. My CIDP is not progressing. I have been in a remssion for seven years. DON”T BE AFRAID TO SEE OTHER DOCTORS.

[IMG]http://img25.imageshack.us/img25/6194/never.jpg[/IMG]

Hi,
HUGS TO YOU, so good to see you’re staying with our group. I don’t know anything about doing a slideshow so I can’t help. Try Ken L, our photographer, maybe he knows what to do.

If you need to interview people, I have CIDP and roll to the beat of a different drummer.

Hi Pat,
There are different brands of IVIG and sometimes you can be on a brand that will cause complications or things like pain. This never happened to me, I responded well, but complications usually happen when you are on one brand for awhile, then for unknown reasons your doctor switches to another. You can’t find out if it is the brand that causes pain or severe headaches unless your doctor believes this is the reason and tries another.

CIDP usually presents as symmetrical, that is, whatever is going on on one side of the body is happening on the other side. Most also have hand involvement as well as foot involvement initially, as CIDP is a disease of the peripheral nerves. It also tends to be ascending, moving up from the feet to the lower legs, moving up from the hands to the llower arms, etc. Even the relapsing/remitting form of CIDP doesn’t normally correct itself without treatments. Having said all of that, there is no “norm” for this illness, but these are some general guidelines. It does sound more like MS to me…
Pam

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.

I went back & read all of your posts & it sounded like a classic case of GBS to me. For how paralyzed you were, I believe your recovery was very short & you seem to be at around 85-90% I think you said? So then why did you even need another EMG if you were doing so well? Did you have a setback or a weakening of your legs or arms? I can’t imagine why they would suggest CIDP if you are doing so well, please elaborate a little…
Pam

Hello,
I’ve never had the extreme pain that many of our members talk about. But I do have EXTREME numbness/tingling/prickling. Since a pain medication does not cut into the numbness, I’ve never needed that either. I’ve had or have all else that goes with CIDP and I am a severe case of CIDP.

It does sound like you probably have CIDP, but a very slow progressive type. The reason IVIG didn’t do much for you in the past is that it tends to work mostly for people who have the relapsing/remitting CIDP, & not so well for those who have the progressive form. I would maybe try an immunosuppressant or even a short period of time on prednisone. But you could try the IVIG again, as you have nothing to lose.
Pam

Neuromuscular disease? After reading through this a few times, it doesn’t even sound like CIDP to me. Genetic? What kind of testing did he even have; never mentions anything about a spinal tap or NCS, hmmm. Sorry to sound so pessimistic about this article, but I know of no one (other than perhaps a child) who can spend that much time in a wheelchair & then get back to running miles every day. I wish I had his doctor!

Dear Paul,
Thanks for your reply. I am not having any other treatment other than IVIG monthly. I have a walking frame so have some mobility, but have to rely on others to take me out. I get very stiff especially in the ankles and knees, but I have a very good physio who works with me twice a week. I cannot have hydrotherapy yet as the wound from my nerve biopsy has not yet healed. With the help of friends I’m managing to keep positive, but I’m realising that I have to have great patience.
cheers Jenny.

I think it is way too early to mention CIDP as her dx. For one thing her initial onset was very quick, & it is possible to have setbacks along the way with GBS just by overdoing PT. I was dx with CIDP after 6 weeks of my initial one month decline, but never showed any improvement in between. I am glad she is getting the IVIG & at this point still think she has GBS.

Dear smk001 I also are from the same State if you wish to compare with notes or treatments. or anything to help
Kind Regards
Paul

The others who posted are right, one nice thing about this forum is that you can get answers from others with CIDP from all over the world. The time zones don’t matter, as we can post at any hour. I had a very severe case of CIDP, have been ill for over 5 years now. Like you I went downhill very fast, so that for the first 6 weeks the neuros all though it was GBS.

Since IVIG, plasmapheresis, & even steroids didn’t work for me, I also ended up doing the chemotherapy route. My neuro used massive chemo threatments for 9 months to virtually wipe out my immune system & then allow it to reboot. The nice thing about that is that I have been stable & off of all treatments since 2003. The bad thing is that I was left with some residuals. Feel free to ask about anything here, it is a very active forum.

Hello Taryn,
I just sent an email to your tom address, which was provided when you sent me an email from the forum. I will email you again because I was never a good typist, always a slow one finger typer, and I couldn’t say all I wanted to.
Liz

Hello Taryn,
Welcome to your new family, where we feel what you feel. You sound similar to me when I first knew something was very wrong. I always liked the idea of keeping a diary or journal because syndromes like GBS and CIDP are unknown and mean “I don’t know”, so a doctor can’t just look at you and see what’s wrong, you have to tell him/her what you are feeling.

Don’t push exercising too much, listen to the fatigue you feel. Treatments like IVIG (infusions) will be started to bring this syndrome under control and until progression is brought under control, exercising will only maintain what you now have.

Click on my username (codystanley) and email or PM me if you’d like to talk.

Did this illness come on slowly, or was it a rapid onset initially like a typical case of GBS? The reason I am wondering is that it could be CIDP, or the chronic form of GBS. Are his protein levels elevated in a spinal tap or lumbar puncture? If he has CIDP, then the standard treatments like IVIG infusions, plasmaphersis treatments, or even steroids could help him. With CIDP it is never too late for treatments.

Hello Leylim,
Welcome to your new family, where we feel what you feel. Flossie is saying that she does well on just prednisone, but the majority of us (I have CIDP) also need other medications. The treatment most often used is IVIG (infusions). Please talk to your father’s doctor and find out if IVIG’s should be started so you’ll know if he does better. If he starts to improve with the IVIG’s, then the doctor can find out how often your father needs them. CIDP is a syndrome that moves very slow, so we get better very slowly. The medications like the IVIG infusions can bring about an increase in strength, but another very very very important purpose is to CONTROL (not cure) the progression of CIDP. When the progression is controlled, we CAN heal and many of us can become “almost” normal. I am now under control and I am healing, but because I was severe, I will not recover 100%. Exercise and physical therapy can be important and help us, but you must accept two things, if you are still in a progressive stage, you are only MAINTAINING the strength you have and we all suffer chronic fatigue, so your father MUST listen to how tired he is.

You do not die from CIDP, when you hear about someone who died from this, it is from complications like kidney failure, heart, or another ailment they had.
NEVER NEVER NEVER NEVER GIVE UP, we do have hope.

Hello and welcome to your new family where we understand because we feel what you feel. If you would tell us where you live, we might be able to find a member in your area, that in itself would help you, the possibility of meeting someone in person. If you have a good neurologist that you have confidence in, keep trying to find a treatment that will help you. Many times it’s just trying different things until you find what will work. If you could list all treatments that have been tried, our members might be able to suggest others.

Hello Jim,
I would guess that you need the IVIG’s more often, talk to your doctor about that and find out if you do better this way before you let yourself think it’s not working. I was never spaced out at every three months while I was progressive. I was put on a maintenence of one day, every other week.

Molly, perhaps we could learn a bit more about your husband. How disabled is he? Is he bedridden, wheelchair or walking with aids? Does he have any other disorder such as lymphoma?. Is he in pain?
The usual course of treatments is IVIG , plasmapheresis, either with or without Imuran, or prednisone in initially high dosage such as 80 –100mg daily. Next come the cytotoxic chemotherapy drugs like Cellcept, Mycophenolate or Methotrexate.
Finally Rituxan may be tried.
As Deb says, we don’t die from CIDP. We either die from something else, such as pneumonia.
I suggest you have a consultation with his neurologist, taking with you a list of queries, which our responses here will have raised. Don’t leave until your queries are answered, you are your husbands attorney, as we as GPs used to be. DocDavid

Hi Dick,
It’s good to see you posting here once in awhile.

I never had pain, but I do have ALOT of numbness. I am numb from feet up a little past the knees. The numbness in arms receded from above the elbows to a little above the wrist. I am no longer progressing (remission or self cured), but I was setting a very slow “progressive” pattern”, months or even a year could go by before I progressed again. CIDP took away my comfortable sleeping positions, I still get what I describe as “bone pressing against bone with no cushioning”, if arm presses against arm or leg against leg. Time will tell how much more I will heal.

Mudbear,

Hello. Sounds like you need your IVIG more often. I get mine every 28 to 30 days. By doing this it prevents me from developing the motor symptoms, difficulty walking, climbing stairs and loss of balance. The sensory problems have also seemed to improve. I also take a immumsuppressant called CellCept 1000mg 2 times a day and Neurotin 3600mg a day for pain. This regime seems to be work very well. Good luck, it is a fine art to get the meds you require adjusted properly.

I was diagnosised last Nov. with CIDP.

Pam K

Hey Y’all,

Well, I have to post on this one too. Steve, don’t let the docs get you down with their comments. CIDP is not terminal.

Back in 2000, I saw Dr. Peter James Dyck (yes, his parents were cruel to name him thusly 😮 ) who was supposed to be the world renowned expert on neuropathy. He has since retired, but I’ll never forget my encounter with him.

I had been at the Mayo Clinic in Rochester, MN for almost a week when I was scheduled to meet with the Fellow, Dr. Burns. I was waiting in an exam room when this rather round, elderly gentleman walks in with the Fellow in tow. He had on a lime green oxford button down over a t-shirt that left the button down looking quite wrinkled. He wore green polyester pants held up with a brown belt. The pants and shirt were shades of green not normally worn together but since his white lab coat covered most everything, it wasn’t too terrible. His shoes were black and well worn. His collar button was not fastened and his brown tie (which clashed with everything he had on) was loosened about 2″. His white hair was thinning on the top and windblown, and his glasses reminded me of the glasses worn by the guys you see in old TV footage of the Kennedy and Johnson Space Center command posts; that brown tortoise shell horn rimmed kind. All this gave him a sort of mad-scientist look. Dr Dyck walked in and plopped down on a rolling stool at a desk where he flopped down my ever-thickening chart. After scanning the first few pages of test results, he briskly rolled across the floor spinning to face me. While taking off his glasses and folding his arms to rest on his belly, Dr Dyck said:
“Well you have a pretty good case of CIDP. We don’t know much about it other than CIDP won’t kill you. However, the treatments can kill you as you have obviously found out a few times during your therapeutic plasma exchange treatments these past 18 months. Now, are you still dead set on staying with TPE, or would you try a much less invasive treatment called IVIG?”

I have to chuckle every time I remember Dr. Dyck because he is my favorite kind of doctor. Brilliant to the point of eccentricity, but blunt and matter of fact. No sugar coating, no baffle them with BS. Just state the facts and get right to the point.

So, Steve, take what most doctors say with a grain of salt. Neurologists I have met either skipped or flunked the part of residency where they teach sympathy and bedside manner.

Hi Meadow,

I also have a port, but I do not recommend one, as you are only starting. I have had some of my infusions at work, but I think that will vary between care givers. Good luck!!!

Hello Andrew,
Like Davidbod, I too am 65, and I was originally diagnosed with GBS, then told it was CIDP. This syndrome can happen to anyone, any age. If you will tell us where you are, we might be able to find a member who lives near you. Is your mom getting IVIG’s? This is what is usually tried first. You don’t always feel better and stronger, another very important reason for this treatment is that it can stop progressing. When the progression can be controlled, we can start healing, then we can get better. Is your mom taking anything like neuronton for the pain? If not, tell her doctor she needs this. Syndromes are one thing where we have to tell the doctor how we feel.

And don’t expect too much too soon, these are syndromes that are going to take alot of time to gain control of. And believe me, we develope our own noirmal and we learn to live good with what we have.

NEVER NEVER NEVER NEVER, give up hope.
Liz

Andrew,sorry to hear about mum, I am 65 with CIDP also. It is a very depressing illness and half the battle is learning how to accept the disabilties it causes. Initially it presents in a very similar way to GBS, but when symptoms progress for more than 8 weeks a diagnosis of CIDP becomes apparent. The treatment is Intra Venous Immuno Globulin (IVIG), later Plasma exchange may be used. High dose prednisone and azathioprine, are introduced and later the more powerful cytotoxic (anticancer) drugs.
No one can give a prognosis as to the future, some recover with minimal residual symtoms, some stay static, some deteriorate. I hope your mother shows some sign of recovery before long.
Most of us get the neuropathic pain you describe, it responds poorly to ordinary pain relievers, but Gabapentin or its new variant Pregabalin are very effective, but it needs to be in adequate dose; it last about 8 hours so if the pain is all day then the dose needs replaing evey 8 hours. DocDavid

Dianne,
Sorry I don’t remember your sig of Nails from the last forum. I went to your profile, but there is not much info there. Just what is your current condition? What do you mean by wanting IVIG to make you feel better? If you are talking about pain, IVIG will not do much for that. If you are talking about the ability to walk, use your hands, or other motor functions, IVIG will help with that, if you have the right kind of CIDP. How long have you had CIDP?

There are two kinds of CIDP, the relapsing/remitting & the progressive. For the first type, IVIG usually works fairly well. But for those of us with the progressive type, IVIG may not work at all. I think if I remember right, only about 60% of people with CIDP have good results with IVIG. But fortunately there are many different treatment options out there now. But I would need to know more about your invidual case. Please post more specific details.
Pam

First off, I am not a doctor, but it does sound like CIDP to me, not CMT. I was under the understanding that CMT was fairly easy to Dx based on blood tests & the fact that it is genetic. I know you may not believe this right now, but be grateful that it most likely is CIDP & Not CMT. Secondly, CIDP, unlike GBS often does present itself slowly, & can take years to develop. I happen to have had a rather sudden onset, 6 weeks from first symptoms to being a quad in 6 weeks, but that is not the norm. Mostly it takes months to develop, sometimes years.

It sounds like your neuro is doing everything right, you were smart to get a second opinion. It is not unusual for everyone who gets IVIG to have miraculous results, actually only 60% of people with CIDP respond well to IVIG. Plasma pheresis also seems to work better for those with GBS & not so well with CIDP. My neuro told me last fall that steroids are the drug of choice now for CIDP; they do have some terrible side effects, but only if one is on them for long term use at high dosages. Your daughter is getting a rather high dose, have they considered infusing solumedrol instead of oral prednisone? It is much easier on the stomach…

One more thing, I have read posts of babies & very young children having CIDP. They seem to have a very good recovery rate, & also a good chance of going into remission. Not to get your hopes up, but I know of many cases of younger people who have had this happen. Rest assured that you are doing all you can for your daughter, & I think she will end up doing very well. CIDP is not the end of the world, there are so many things so much worse out there.
Blessings, Pam