Anyone out there that has had CIDP for 20+ years??? Also, Respiratory problems?

Are you going to the symposium? I think its one of the discussion topics. I am interested in this topic as well. I have only been at this 2.5yr so I am still a newbie or at least I feel like one as I never know whats in store in the future.

Hi Lauren! In 1989, I went to the doctor complaining of numbness and tingling going on in my legs and he did my first EMG. I was admitted in the hospital with possible stroke symptoms. I was 28 years old when this nerve damage stuff started on me. I just happened to notice after I had a Hepatitis B Vaccine that a few days after that vaccine, I started getting sickly. Fatique, IBS, but more numbness and tingling going on and I noticed it when I went to bed at night that both of my legs were falling asleep. Legs would get dead and I had to work them to wake back up. Weird feeling! Totally weird! I became a challenge back then because in 1984, I had a blood transfusion and the next day after my C-Section and that blood transfusion they mentioned AIDS and blood transfusions on TV. What a worry for me! Mine started in 1988 a few days after that vaccine. Then I started getting worse. They said back then that I had sensory neuropathy only. A few months later, I showed Motor/Sensory Neuropathy. Chronic Demylenating Axonal Polyneuropathy. Saw one Neuro and he was positive I had MS. Tested me and said no it’s not MS. But could not give me any answers. I had the HIV test for 5 years over and over again with negative results. They even did a nerve biopsy back then and it only showed small fiber neuropathy. Still no answers!After that biopsy and cutting of my nerves in my leg I had another massive attack on my nervous system. And I got nasty nasty sick. 5 years later and finally going to University of PA Hospital after that attack they found me to have Lupus and said I did have a Stroke, along with CNS problems. So they ruled me as having CNS Lupus. Lupus even rare can cause CIDP. I was placed on pulse steroids and cytoxin.. I think it was Cytoxin but it’s been so long and I have tried Imuran too along with a few other drugs. No Rituxan just yet or Cellcept. Even though I was on all these drugs for Lupus I complained about the nerve damage going on in me alot! All the time! They told me I had lupus for a long time but must have been looked over as something else. I do remember in my teen years noticing my legs fell asleep back then too but I can’t really correlate if that was going on then also. The big bang hit me after that vaccine. Don’t know why but it made my disease come out of the woodwork. From 2002 until 2006 I started getting better and went in remission. The lupus went into remission but the nerve damage was laying dormant for a while. Meaning it could have still been there or I did get better. I was driving again, walking very well and doing exercises. Actually felt normal and felt like I was human again! But in 1998, I developed Asthma. Never had asthma a day in my life and then I get asthma. From 2002 to 2006 my asthma was fine. No problems. Then in 2006 I got asthma again with mild CODP. I also developed GERD, IBS, B-12 A Pernious Anemia, Osteosporsis, High Cholesterol yada yada yada! LOL! The cat with 9 lives! LOL! Thyroid issues what next. Back in June they said I had CIDP. I honestly think I had CIDP back then also but not sure! But my nerve damage stuff has always been there since 1988. I think I did go into remission and having that back surgery either brought it back and have another issue that is still not answered or it could have been my surgery causing this Graves Disease and thyroid cancer to come out causing me major problems. Then again I still have Lupus. My main concern, is right after that back surgery and getting nerves worked on. They took my sciatic nerve and rerouted it away from my spine to take away the compression plus shaved down 3 disk. Then I had that massive attack again! Just like I did many years back! I don’t know what caused your CIDP and do they know what caused it? The funny thing is me having an Epidural Injection a year before because of a back injury and my whole body got numb and scared me to death! So my nervous system is very fragile! I never had GERD and Asthma and the bone loss is most likely from Steroids. But I think it depends on how well you take care of yourself with this issue. Meaning no smoking, plenty of exercise, taking vitamins, eating right, staying away from stress. I think it really all depends on the person and what they eat, what they drink and getting the proper rest. And what they are diagnosed with. Lupus can be treated but there is no cure. Just like MS! Remissions and flares over and over again. Stress can cause a flare, virus’s can trigger a flare, climate change and surgery. I will never get better! I may go in remissions but the disease is still there in my body lurking for the attack. I believe this may be the same with CIDP. Some get better and go years and some might not! But! How did that person care for themselves over the years. Did they smoke, drink, sleep all day, no exercise, eat the wrong foods. All of that right there can effect a person with any type of illness they have. If you take care of yourself, you may do fine and get better. But once you get diagnosed any nasty habits you have in your younger days can and will effect you in later years if you keep doing them. Each person is different and each immune system is different. Age can also be a factor! The older you are the more prone you can become getting other diseases.
I hope this helps! Hugs! Hate to see you so young here! Once I got on meds for lupus.. I did get at least 13 years of doing okay. Was not normal but did okay!

Hey Lauren! After your second babie’s birth, did you by chance have a Nerve Block or.. I forgot what they call that.. it’s where they place a needle in your spine and it numbs your body from the waste down. They use this alot when a woman is in labor.
I noticed Stacey saying she had a back problem, I too had a back problem. We both had epidural injections in our spine. Seems kind of strange how we had that epidural and then had some problems. Like we had the CIDP lurking in our systems just waiting for something to activate it.
Like maybe we have something in our immune systems that we carry in our blood or genes and the moment something that is not supposed to be there we react to it making us severely ill.
23 is very young. I think back then in the 80’s CIDP was not really recognized as often. GBS was around but CIDP was considered into a different criteria and alot of Neuropathies back then were not all considered CIDP. The research they have done has found that many diseases are can cause CIDP! Research and treatments have changed and the chances of a cure is getting closer than when I was at your age. Even Lupus treatments have changed some. They now have Rituxan and Cellcept and Neurontin and back then when I first got diagnosed Neurontin was not even around.
I still wonder about this spine issue. When I read a posting Stacey brought up it just seemed weird that we both got a back injury and had something done to suddenly get very sick. I still question that one myself! Just like vaccines effecting some of us. Surgical procedures for others.
You do have hope Lauren! I think in time things will get better for you. But you too have to take care of you! No smoking, no drinking heavily, watching what you eat etc. Putting yourself in remission which can happen! And you may see a much brighter future. Something that helped me with my lupus back then. I took my mind off my disease and did crafts. Thought of my children and I wanted to live and get better. I made a hope chest for my children with hand crocheted baby clothes or Christmas decorations I made. Placed them in zip lock bags and put them in plastic bins. All my children now have their special box they use every year. I would get outside and sit on the ground sliding my body around with a spoon and would dig a hole and plant a flower. That helped me gain muscle strength and got me better. What ever you do! Just because you are sick right now! Don’t you give up! Keep hope in your mind and will power. You keep that and you will see yourself getting better. May take some time but think to yourself everyday.. that your children need their mom! That kept me going! I wish you my very best and hope to see that day when you say you are feeling fantastic! Hugs!

Hi Lauren,

I was 36 when I was diagnosed. Just a tad older than you….;) It was after three epidural injections into my spine for a disc problem. Linda has a good point…

My son was only 3 at the time. I spent about a year in denial…I got IVIG and all of that but underneath, I denied that I was sick. I was so scared of what was going to happen by the time I turned 40, 50, etc…just like you.
I have to say, I still worry about it but I’m not as scared, if that makes sense.

I have progressed quite a bit, in my opinion. I dont walk that well, both feet are numb and none of my toes move. My hands are affected now, too.
When I first went to the dr, I just couldnt move my toes on one foot.

At the same time,thinking this has progressed quite a bit, it really hasnt when you compare to others. I am still able to work full time, I am a wife and mother and have a very busy life. I just keep getting up every morning and starting over.

I’ve tried to put into my head that I have CIDP, it doesnt have ME. It doesnt always work…but it’s what i try to focus on .

Try to learn as much as you can about this and like Linda said, take care of yourself.
Hold on to those babies and love them with all that you have…I have been given excellent advice here on days when I really felt bad about missing out on things as my son is growing up. The thread is called how to explain to your child…or something like that.

You have found a wonderful support group.
It’s easier said than done…and I should take my own advice sometimes…but try not to worry about ten years from now. Enjoy today…

wish I had time to say more but I am at work and need to get something done!

have a great day and I hope you continue to get better !

Stacey

by the way, it’s been two years since I was diagnosed.

Hi Stacey! That is weird how we all three had the shot in our backs and noticed a change. I’m going to try and look this up some. See if there’s been any strange complications that we just don’t know about. My Epidural was about 2 years ago too. My back was hurting me so bad. I did not really notice how bad my walking was until my mom landed in the hospital and walking those long hallways.
I had my family walking down the hallway talking to each other and they noticed I was not with them. They turned around and saw me struggling to catch up with them.
I think I should have gone back to the hospital after that injection. They released me right after that injection about 30 minutes after it was done. I got home 15 minutes later and was walking okay. Then my whole body went numb! My head felt tingly, my neck felt weird, my arms and legs got all numb feeling. I flopped on the couch and started praying.
Before my back surgery was done they did an EMG/NCV on me! There was Demylenating Sensory/Motor Nerve Damage in that test! Eight muscles were also damaged in my legs. Having that surgery made it worse too!
This is terrible to say this, but I had a nerve biopsy back in 1991 I think that’s when it was and right after that I had a nervous system attack. And then the Epiderul Injection caused an attack and then the spine surgery caused an attack. Seems like anything to do with nerves or nerve repair or messing with the mylen sheath on me is dangerous.
So I’m kind of scared in that factor of having any kind of surgery that has to deal with major nerves or nerve repair! Or messing with my spine now!
I had a hysterectomy and no problems. Thyroidectomy and so far no problems. C-Section and no problems! But that spine for some reason and nerve biopsy brought whatever it is out of the woodwork and made me sick as a dog. I’m still hoping this thyroid was my issue here! At least in my hands I think it was, but my legs are still messed up. I don’t know if I will get like I was 2 years ago with my legs getting better! Alot of damage has been done. The car accident didn’t help matters either. They won’t never mess with any nerves or mess with my spine anymore!
Just weird about that spine and needles. Hmmm! I’m going to check further into that one!

Hi, I wanted to respond to this post because of the similarities of needles in the back and CIDP. I am 38 and came down with rapidly progressing CIDP about a year ago. In previous years, I had a series of “weird numbness things” happen to me, which have me wondering, if maybe I had CIDP for a lot longer than I thought and it has just gone into remission several times on its own. Starting in my early 20s, I would have periods every few months where my feet would fall asleep for days at a time (no other symptoms). Dr. at the time told me it was because I am thin and have a desk job, sitting in a chair for long periods of time would put pressure on my nerves in the backs of my legs. Tarsal tunnel syndrome she called it. Over the years, it became more and more infrequent until it kind of just stopped. Then when I was 30 and in labor with my first child, I received an epidural. I had a long difficult labor and delivery, very difficult time pushing my son out. When it was time for me to get out of bed, we discovered that my left leg was extremely numb and I could not walk. Thought it was just after effects from the epidural. The numbness lasted for weeks (I limped around as I could not support my weight on that leg at all) and I ended up having an EMG/NCT which showed it looked like I had some nerve damage in my spine, but an MRI showed nothing. Eventually the numbness mostly subsided, but a tiny bit remained for years. This is interesting because others here experienced this problem after having needles in their back. Plus, if the numbness in my early 20s is CIDP-related, then I have had this for nearly 20 years and have had a lot of remision time. I am in remission now due to IVIG, prednisone, and Imuran. Good luck to you.

Hi there, I started IVIG in January (diagnosed in Dec.) I had my 5-day loading dose in Jan. and then had it monthly for Feb., Mar, and April. I didn’t have another treatment until July and my next treatment is in Nov. My Dr. wants me to go 3-4 months between treatments for now. I do not notice a decline in my function in between the IVIG treatments, so either i am truly in remission or the small dose of pred and Imuran are keeping me in remission.

I think is difficult to say what CIDP prognosis will be, as we can not really say when all this started, as we all seems to be diagnostic very late when we have seen many docs and have several test for not explained pains and symptoms.
I think there should be a test or something that we can get as references or marks of progression.
The pain and parsthesias we have are kind of subjective.
Not is arms movement issues, handwriting problems, using a cane or walker, or a wheelchair.
Right now I can walk properly, but I´m not worried now if in 5, 10 or 20 years I will be in wheelchair or paraplegic.
I´m trying to be as positive as is possible about this…..

Hey guys and gals

Like ConnerzMom, I was “diagnosed” at 37ish. I had an episode of acute renal failure where the pain did not resolve. I ended up with hypersensitive nerves in my back. I had my son in 1997 – had an epidural and suffered because of the hypersensitivity. I must say that it was bliss not feeling anything because of the epidural.

I didn’t start having problems around numbness, etc. until 2000ish. My feet were dead when I got out of bed. My hands, similar.

I am now 10 years down the track. Things have deteriorated but I can still walk. My hands are pretty useless. But, you adapt and learn how to work around the issues. But the issues are almost totally sensory; I agree that it would be very helpful to have some sort of diagnostic test to help out.

I learned alot from a pain therapist. She was really keen about making sure that you don’t worry about what will happen ni the future; because if you do, you may get to the future and have wasted that time for living! She also helps me look at ways I behave so that I don’t take advantage of being “sick”.

But – I am assuming that I will have this for the rest of my life. I will take what comes and live with it.

Debs

This is a really neat subject that I plan on looking into today. Just weird how we all found something here that might just be the culprit. But it might not be. Just seems weird though how we have found 1 thing that might have triggered this stuff to come out.

[url]http://www.oyston.com/anaes/local/muir.html[/url]

Hmm! This article shows there has been problems with epiderul’s. Going to take some digging to see what else I find. But I found this to be rather interesting.

Hi Lauren,

I was 24 when I got CIDP and I’m 37 now. It’s not been easy all the time, but honestly I’ve managed to do most things I’ve wanted with my life so far. Finding treatment that works and knowing your body’s limits are very important in not going nuts! You might want to pick up this book, by a great writer who got it when she was 21.

[url]http://www.amazon.com/Two-Kinds-Decay-Memoir/dp/0374280126[/url]

Also, I’ve read in a lot of the medical lit about CIDP that pregnancy is known to exacerbate the condition and cause relapses. I think it’s been pretty well documented. Have your doctors mentioned that? There have been several women on the forums.

-kat

Disturbing to think that a needle in the back might be a cause of CIDP, since a lumbar puncture is one of the standard tests for diagnosing it. 🙁

Gawd! I hate doctors. The thought of being dependent on them for the rest of my life just galls me! I wouldn’t be so bad, I suppose, if they would just admit they don’t know what the hell they’re doing, but I suppose that’s just not in their nature, is it? 😡

I hope things are different for Kevie, he is only 11. Reading some of the replies, life sounds daunting. For the responders that are not doing well, do you have the progressive variant? I have been doing pretty ok lateley with hope and optimism, but today I feel like those poor men in vietnam that went up Hamburger Hill 10 times and kept sliding down and failing. I hope we can take that hill one year soon, Kevie and I. Wow, I should not have watched Hamburger Hill this morning and read this post. Time to get back on the hopeful train. Maybe I will go shopping. I have to hope that there is a bright light in Kevies future. It would really suck to be going through all of this for not.
Dawn Kevies sad mom

Lauren, Linda and Dawn,

I’ve never had an epidural, but I have CIDP. I guess my labor was easy (my wife didn’t have it so easy though). 😀

I have read stories on this forum that indicate some CIDPers experience remission and lead relatively normal lives. I’m determined to be another…

Now I’ve only had symptoms for a few months, was diagnosed this summer and began treatments in September, but I seem to be responding well to my treatments. I’ve regained a tremendous amount of motor function and strength. Key things that seem to have worked for me are early diagnosis, early treatment, a healthy lifestyle and a strong faith.

Who knows what CIDP means for us long term? But I do thank God that I have found my friends here who are taking this journey with me. You all give me strengh and encouragement.

Dawn, I pray for long term remission and a long joyful life for Kevie. With you for his mom he has a good head start. I pray for peace and encouragement for you as well and that Kevie’s life will bring you joy (Proverbs 23:25).

Gary

Finally getting to post again after having a long week babysitting my grandchildren. I’m pooped! Will post about that one this weekend. But I found a really interesting site regarding the epidurals that were really interesting. You will have to scroll down and read this. All though CIDP has different variants and can be caused by many different diseases meaning that not all of us got the CIDP from the epidural but some of us may have gotten this problem. Especially those that noticed something strange going on after they had that epidural done. Stacey, Lauren, myself and few others that got CIDP either by a back problem or child birth may have developed this as a result and it may be the answer as to why we have no diagnoses of our CIDP. Was really scary reading though so I must warn you before you read the dangers. In Lauren’s case after having her child.. this might be why she has CIDP and Stacey it could also be a factor since she had a back injury. And myself having the back injury with the injections.
But CIDP can be caused by other reason besides this. A disease process. Some get diagnosed and treated while others do not. As in my case! Lupus can cause CIDP, Thyroid and then a Malabsorption problem with B-12, Vitamin D. So many things can cause this CIDP. But for some that noticed something strange happening after this procedure. It might be what your problem may be. Just really ticked off that none of us knew this danger and have had this done and was never told the real risk of what could happen if it gets done.
Here is the website:

[url]http://www.healing-arts.org/mehl-madrona/mmepidural.html[/url]

For Stacey and Lauren… this could be why you have the CIDP problems. Including myself but I still have other health issues too. I think I would print this out and actually show it to your doctors and get their opinion. It might be your answers as to why you both developed CIDP. I have even printed out a copy to show my Doctor at Duke when I see him. So if it’s not my Lupus, or Thyroid problem. It could be the injection I had and may have caused a spinal trauma injury. Possible!! But we all know that CIDP is caused by different variants.

[COLOR=black]Hello Dawn,[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]It is daunting to face life with a chronic disease; all of us (and our loved-ones) who have one know it all too well. You need to remember, though, that most of our posts (and people who go to the symposium) are from people that either are really trying to understand their disease (think Norb and Andrew), are not doing particularly well and need the support of people who “get it”, or are nurturing people who want to help out (you and Donna). I don’t think many people will mild cases post here very often.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]I have a friend who is a nurse. She does some home health care and one of her patients has CIDP. He gets a monthly dose (single day, probably about 0.4 g/kg) of IVIg and lives a very nearly normal life (works as a school principal, rides his bicycle for exercise, has an active family life, etc.). He is the sort of person who probably does not post here. He is likely, though, representative of a good number of people with CIDP.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]I also do well. I likely am in the progressive phase of the disease, so it is not too surprising that I have to have a more aggressive treatment than my friend’s patient does and that the disease is not perfectly controlled. PM me if you want the details, but suffice it to say that while a burden, it is manageable. I work full time (and more) as a chemist, volunteer at my church, and do many (90% or more) of the things I used to do. I consider myself, through God’s grace, a success story. I have been dealing with CIDP for a little over 3 years, so I can’t give you a long-term success story. Still, the fact that I am well controlled suggests that I have a few good years left. After that, well, I am a fat, middle-aged man, so who knows what else might be around the corner.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Whether or not Kevie will outgrow his CIDP is something none of us can predict. I hope he will and I think your reasons for hoping so have merit. I am by nature a pessimist, so I am not good at giving people hope. Nevertheless, I think Kevie has a good shot at a nearly normal life, regardless of whether he outgrows CIDP.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Godspeed,[/COLOR]
[COLOR=black]MarkEns[/COLOR]

Thanks for the pep talk Mark. You are more of an optimist than you think!!!! I really do think that there is a chance for Kevie, more than just hope, scientific. I think there is a connection between puberty and the thymus gland and the opportunity to correct itself. Occasionally I get in my funks. Time to stop wallowing in pitty. It would be no big deal if it were me, it is just so hard watching a little boy go through this and wondering about the future. Sometimes I get confused, is cidp progressive for all, or is there a distinct progressive varient (as I have read) Some on the site have mentioned that they do not maintain w/ ivig eventually and progress, that is the part that worries me. Were they mis dx from the get go, or is cidp progressive for all? Nothing I can do to change the future of something I cannot control. I have to learn a better way to just do the most and best we can, hope for the best and deal with anything else if it comes our way. Thanks for taking the time to respond. It is greatly appreciated! I am happy for you and Kevie to know that you ARE able to live your life pretty close to normal. I am going to take that and run!
Dawn Kevies mom

Linda,

I wasnt able to get that web address to come up…keeps telling me not found. I will try again tomorrow from work. I have to go in for a couple hours. yuck, on a Sunday ! I am really interested in what you have found.
I’ll let you know if it works.

Dawn, I wanted to reply to you also but I was at work and everyone was popping in and out. You have been such a strong…super strong advocate for Kevie and of course you worry about his future. The Mom that you are, it comes natural for you to worry endlessly about everything for him. It seems things have been going pretty well and I hope you can live in the now, as it is now, and run with it as you say. I worry about my future alot. I used to worry a whole lot more. But, then, I am not the mother of a child that only wants the best for him. Either way, I guess I’m trying to say it’s hard not to worry and be scared.

I already worry about Connor fitting in when he gets to high school and if he’ll get in the wrong crowd, etc. I couldnt imagine if it were him with CIDP.

You deserve your pity parties and funks, too. Look at how hard you’ve worked to find answers and proper treatment and dr’s. Not to mention just being there for him to get him thru the infusions and soothe him when he gets sick from them. And then you are there, thrilled as can be, when he gets “air” from a bike jump and when he’s playing just like the other boys on the trampoline.
You need your time to be sad, too. Cry or scream or throw things or shop like a wild woman…do what you need to do for yourself, too. It’s ok.

I intend to be around for a long long time . You have made a lasting impression on me and I’ll never forget you and Kevie and where you started with all of this…and someday you’ll be telling us how wonderful he’s doing in college somewhere. I’ll be here then cheering with you…and I’ll be here now while you’re in your funk. And I’ll always tell you, I admire you as a Mom.

big hugs my friend. Tomorrow is another day.

Stacey

ps. i AM the mother of a child that only wants the best for him…I’m not a mom with a child with CIDP that wants the best for him. Had to clear up that typo there.

😉

ok, Nope, cant pull it up from work either. maybe you can cut and paste and email it to me ?

Lauren,

I had my first symptoms in 1989. I was diagnosed with a peripheral neuropathy, but they could not figure out the specific diagnosis. Symptoms persisted and I got a CIDP diagnosis in 1999.

Remember first that CIDP has sub-sets and everyone’s experience is not the same. I was never one who had severe downturns. Mine was slow and steady. The worst period was between 1997 and 2006. I suffered the most physical damage then. Now my deterioration has slowed, and I suffer with residual pain and severe numbness in my legs. I have muscle weakening and much less stamina. Recovery from doing too much is longer and painful.

BUT… Everyone is a little different. Many people recover in different levels, but most deal with their CIDP and lead fairly normal lives. You just have to watch what you do, and how much you do of it.

REMEMBER… When you ask here, “Who has had it for 20+ years” you will be getting responses of those who have hung around the forum a long time. Those people want to help, but they also have usually had more severe cases. Keep that in mind when you read things. AND you cannot predict what will happen to you, just because it happened to me. Read what everybody says and think about how it applies to you. There are many things you can do to help yourself. The first is to learn about the disease. Learn as much as you can. Then read and learn from other’s experiences. Then apply it to your life and be the most positive person you can be.

Good luck. I give you my best wishes for a positive lifestyle.