Hello AllyinCali,

Yes, CIDP can be effectively treated so that one can live an almost normal life. I know, because I do. I work full time as a chemist, volunteer at my church, and do most of the other normal things in life. I walk a bit slower than I used to, along a somewhat zig-zag path, but most people would never know I have a disease. You need to remember that web-based support groups tend to draw those with bad cases, so what you read here is probably not representative of typical outcomes.

At this point, I would give the IVIg some time to work its magic. It may take a few months to improve to nearly normal walking. The fact that you improved and then relapsed suggests that IVIg is effective, but that you will need it for the next while. You have become part of an experiment, one in which your neurologist and you will change doses and frequency. You may find that you need to add other drugs as well.

To answer your question about getting worse over time: it is hard to say and it depends on the person. CIDP is most likely not the disease that will kill you in the end (although some do die of complications and rare variants that harm the heart nerves), but since our nerves tend to give out as we get older just due to age, nerve damage now will make our old age a bit more challenging. Still, if you gain control or become stable, you probably will not have too severe a progression.

Godspeed in your recovery.
MarkEns

Hi Ally

There have been a few people recently who have posted that they feel that they are “healed”, or “cured”. Certainly their symptoms have diminished to a degree where they don’t need meds, and their physical issues are resolved.

Definitely have a search on the threads for their stories!

Good luck, welcome to the family. You have done well to be diagnosed so quickly, and you are having IVIg, which is the gold star treatment. As Mark says, give it some time.

I have had CIDP for some years – and been having IVIg for about 5. I am stable.

Take care of yourself and I hope that things get more positive.

Cheers
Debs

Ally,

Yes. You can get back to where you were. You may have a little issue here and there but who doesn’t… and that goes for people who do not have to come to this website.

Here is a good website.

[url]http://neuromuscular.wustl.edu/antibody/pnimdem.html#cidp[/url]

Damon

Hi there, yes things can look bleak but they can most definately also get better.
Just a quickee post as am getting kids out the door to school and then off for my weekly treatments, I was 33yrs (last year)when began symptoms which were immediately diagnoised and treatment initiated. After a horrendous 9 months on a very bumpy road, needing an electric wheelchair, totally paralysed, yesterday a easily did a 8km run, and have been doing duathlons (run/Bike/run races) once a month for the last 4 mths. Feel like am 97% back to normal but am still on lots of treatment but just wanted you to know there is DEFINATELY hope. Hang in there and take each hour or each day at a time!!!!!!!!!
all the best and you are welcome to PM at any time. Take care
Kiwi

Don’t waste any energy being depressed!! Your doc seems right on top of things!! He adjusted your treatment quickly and agressiveley. Some docs do it week by week. He did the right thing. Just a little history, Kevin my son was dx @10, he is now 11, 12 in Dec. It has been 23 months total. In the beginning, we had mis dx, from being nuts, to musc. dyst. to gbs, cidp, gbs and cidp again. At his worse, Kevie was loosing control of bladder, bowels could not empty and breathing was starting to get difficult. He could not walk, carried him into the car, could not lift his underwear up, hard to stand. NOW, with 10 months straight monthly ivig doses, he rides his bike, runs plays football, baseball, swims trampoline, this weekend even felt strong enough to take a ramp, get some air and jump 4 stairs on his bike. That is huge, he has not had enough upper body stregnth to do that in 2 years. SO….. you can get back to normal.

the most crucial thing to remember is you cannot have another relapse. You have to stay on top of it. That may entail monthly, bi-weekly, every three weeks, what ever plan you need of regular ivig. How it works ( speculated) is the ivig floods the body w/antibodies, taking over the auto antibodies (bad) allowing the production to slow. Another theory is the ivig is used as a barrier on top of the myelin sheath so that the attack happens to the donor antibodies, not your myelin. During this phase, the inflamation on top of the myelin sheath calms down and repairs start. The nerves are able to get the message from the brain and send it to the appropriate muscles. It is said that the nerves heal about a mm a day, so in theory, if NO additional attack or demylienation occurs, you can heal about 14.27 or 37 inches a year. (I have to do that calculation again, it was a while ago, and I think that was the conversion) So yes, provided you stay on top of a relapse and are in constant heal mode, you can repair. Is my son 100%, honestly, not yet, his major problem is fatigue and pain after he overdoes it, unfortunately that is often because he plays like a mad man. But I swear to you, I mean this, what he is lacking physically now, he as well as myself have gained imeasureabley in the compassion, understanding and determination department. We definateley look at the glass half full now. We are stronger now in ways you can’t imagine.

Your journey is new and there will be many feelings along the way, emotional, physical, but there is a light at the end of the journey!!!! Good luck, stay strong and stay on top of things!!!!
Dawn Kevies mom

Hi Ali,
Glad you found this site and I hope you continue to share with us your journey through this diagnosis. Each of us has such a differant road with this and rely so much on eachothers experiences to learn from and you are definitely part of that so welcome. For me, I have learned to accept a new normal as opposed to getting back to where I was. Of course I have a slow progressive version of CIDP so for me the loss was gradual but at my worst I was pretty unstable without braces and a cane and recently am enjoying improved strength. I may never run or be able to walk as long as I used to but I am definitely better in measures beyond physical. I try to live in the day. Not the past or the future and believe me it has taken a lot to get there but I got there. So keep on doing what you can and know that we are here all the time. All my best,
Linda

[QUOTE=Dawn Kevies mom]Don’t waste any energy being depressed!! Your doc seems right on top of things!! He adjusted your treatment quickly and agressiveley. Some docs do it week by week. He did the right thing. Just a little history, Kevin my son was dx @10, he is now 11, 12 in Dec. It has been 23 months total. In the beginning, we had mis dx, from being nuts, to musc. dyst. to gbs, cidp, gbs and cidp again. At his worse, Kevie was loosing control of bladder, bowels could not empty and breathing was starting to get difficult. He could not walk, carried him into the car, could not lift his underwear up, hard to stand. NOW, with 10 months straight monthly ivig doses, he rides his bike, runs plays football, baseball, swims trampoline, this weekend even felt strong enough to take a ramp, get some air and jump 4 stairs on his bike. That is huge, he has not had enough upper body stregnth to do that in 2 years. SO….. you can get back to normal.

the most crucial thing to remember is you cannot have another relapse. You have to stay on top of it. That may entail monthly, bi-weekly, every three weeks, what ever plan you need of regular ivig. How it works ( speculated) is the ivig floods the body w/antibodies, taking over the auto antibodies (bad) allowing the production to slow. Another theory is the ivig is used as a barrier on top of the myelin sheath so that the attack happens to the donor antibodies, not your myelin. During this phase, the inflamation on top of the myelin sheath calms down and repairs start. The nerves are able to get the message from the brain and send it to the appropriate muscles. It is said that the nerves heal about a mm a day, so in theory, if NO additional attack or demylienation occurs, you can heal about 14.27 or 37 inches a year. (I have to do that calculation again, it was a while ago, and I think that was the conversion) So yes, provided you stay on top of a relapse and are in constant heal mode, you can repair. Is my son 100%, honestly, not yet, his major problem is fatigue and pain after he overdoes it, unfortunately that is often because he plays like a mad man. But I swear to you, I mean this, what he is lacking physically now, he as well as myself have gained imeasureabley in the compassion, understanding and determination department. We definateley look at the glass half full now. We are stronger now in ways you can’t imagine.

Your journey is new and there will be many feelings along the way, emotional, physical, but there is a light at the end of the journey!!!! Good luck, stay strong and stay on top of things!!!!
Dawn Kevies mom[/QUOTE]
That’s a very good explanation of how the IVIG works Dawn. I am copying it and saving it. And giving it to hubby to read. He tends to overdo things because he is feeling so good these days, and I always tell him to take rest periods and he responds “why?”. My explanation of why hasn’t been very good so I think your explanation will impact.
Laurel

HOw kind Laurel. Unfortunateley, Kevie does not always listen to me either. It’s a guy thing!! Sorry guys!! Hope you and your husband are doing well.
Dawn Kevies mom

Ally,

When I was diagnosed with CIDP last sept. I was almost totally paralyzed from the neck down. Since then with some very good dr’s. and some good rehab people I have been able to recover most function and was actually able to go back to my job as a diesel mechanic inside of 4 months(against my therapists wishes but oh well). I still have bad days (some very bad) and some of my symptoms are trying to return since my neuro. tried to ween me off of the steroids but it can be done with enough work and determination You should get back to fairly normal at some point in time, you’ll just have to realize that now you have a new reality and find a way to work with it as best you can.

Good luck to you, the people on this site are wonderful people and will answer any questions you might have to the best of their ability, or if nothing else can point you in the right direction.

[QUOTE=Dawn Kevies mom]HOw kind Laurel. Unfortunateley, Kevie does not always listen to me either. It’s a guy thing!! Sorry guys!! Hope you and your husband are doing well.
Dawn Kevies mom[/QUOTE]

Boy is that the truth. That is my hardest thing, but I keep pushing forward. My own daughter does not understand that but I am the one who has to keep him in balance(not body balance)
Joanf

So many people have posted wonderful responses that I say “Here, Here!” 🙂

I too am doing relatively well, back to work 4 days a week 6 hour shifts, and slowly adding hours to my day as I can! Trust me I’ve had some bad days emotionally, its hard to accept your new normal, but my GP told me, “At some point, everyone has something, for some people its diabetes, or rheumatoid arthritis, for you it is CIDP, just don’t let it overly define your life.” Now don’t get me wrong, I am in NO WAY comparing CIDP to RA or diabetes, but for me it helped me put it into perspective.

Keep smiling!

marjie

Hiya,
There have been some very good responses to your question, so I will not add anything other than it depends on the person’s reactions to the normal protocol of treatments.
Where in California are you? I am in north county San Diego, and have a wonderful, very pro-active Neurologist who specializes in rare neuro-muscular diseases.
All the best,
Ken
(KEDASO)

We just returned from Santa Monica and LA this past summer, Kevie had a wish with Make a Wish. It was an amazing experience.
Dawn Kevies mom

I have been fortunate the past 4 1/2 years not to have developed a cold, but I have been off of all treatments for CIDP since Septemberof 2003. But when I was on IVIG I was also put on Imuran, which is an immunosuppressant. Since it supresses the immune system (making the white blood cell count lower?), it might make it more difficult to fight colds & any infections. I have not heard of this problem from others with CIDP. It sure sounds like you are doing great overall though; back at work, wow. I could only dream about teaching again, way to go!

[QUOTE=Pam H]I have been fortunate the past 4 1/2 years not to have developed a cold, but I have been off of all treatments for CIDP since Septemberof 2003. But when I was on IVIG I was also put on Imuran, which is an immunosuppressant. Since it supresses the immune system (making the white blood cell count lower?), it might make it more difficult to fight colds & any infections. I have not heard of this problem from others with CIDP. It sure sounds like you are doing great overall though; back at work, wow. I could only dream about teaching again, way to go![/QUOTE]

when I was put on ivig i was only given ivig that really helped me there was no immunosupressent given. I do have problems that flare up when I get the nasty colds, there has been a nasty cold going around here and I am crossing my fingers i don’t get it been real lucky so far . I wish that I could go back to work. so good luck you sound like you are doing good overall, and that you are a very strong person. good luck ask why you need the immunosupressant i have never had that and ivig is great for me ..