Seeking Help understanding CIDP
AnonymousMay 10, 2006 at 6:48 pm
The burning started two years ago in my feet. Then last summer it started to travel up my legs. By Feb. of this year my chest and back were included. I found it a chore wearing clothes. I couldn’t remember the last night I slept straight through. I started to cry, the pain was so bad I finally broke down and called my family doctor. While being examed my feet were swollen, my skin hurt so much he couldn’t touch me. He then refered me to neuro specialist. 3 weeks later I showed up for my appointment. An EMG and safety pins pricks, he settled me down in his office and explained to me what I had. CIDP, Cronic Inflamation…ya da da
So far the insurance company has paid over $43,000. From a spinal tap to IVIG. I had the first two at the hospital’s infusion lab. And then I just had my first in home Infusion at home thi past weekend. The nurse shared some tricks to make the experience easier. Like drinking as much water as I can during the infusions. I have been going through alot and still need to have some questions answered. The more I read online in places like this, the worst I’m starting to feel. I would need to have someone just tell what to expect as time goes on. I think I can handle it, so long as it the truth. I don’t know what questions I need to ask the doctors.
The Neuno doc, said I “should feel fast relief” after the first IVIg. I didn’t. My legs feel like rubber. I need to use two hand to climb the stairs at home. My skin is still feels like it’s on fire. It hurts when I take showers. And I can hardly stand it to dry myself off. Then putting on clothes to go to work scares me. Can someone help me find the questions and should be asking. Am I handed for SSI?
AnonymousMay 10, 2006 at 7:23 pm
Rich, I’m sorry you have CIDP as I’m sorry for anyone that has it. I’m not suprised at your Doc saying you will feel relief fast because most of them really don’t know much about this d[FONT=’Times New Roman’]isease. I can tell you for sure nothing is [I]fast[/I] with CIDP/GBS. The old standard is GBS = [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. [/FONT]
[FONT=’Times New Roman’]Now you will have a ton of people helping you with questions that are better qulified than I for I am simply a care giver of a CIDP Mom who is now living on her own. 🙂 [/FONT]
[FONT=’Times New Roman’][/FONT]
[FONT=’Times New Roman’]KC[/FONT]
AnonymousMay 10, 2006 at 7:45 pm
Welcome to the forums, sorry you had the need to find us.Do you take any medications for the pain and burning relief. There are many meds out there that might be able to help you, such as
Prednisone( lots of side effects)
CIDP is a chronic immune neuropathy with symptoms of weakness, numbness and loss of balance. Each patient has to be treated individually hopefully by a Neurologist with some experience with either GBS or CIDP. Also IVIG doesn’t always work, maybe you need a second round of it.
When my husband first got sick, he couldn’t have anything or anyone touch him, it brought on the worst pain.
What specific questions do you want to ask? Ask away, there is enough experience on these forums and you will get answers. We have all found that there is better info here then you get from a Dr.
Stay with us and we all will try to help you. Take care Rich. 🙂
AnonymousMay 10, 2006 at 7:51 pm
I hope some people who are registered on the forum will post to tell you how they feel after IVIG. I know I have spoken to someone who says that it takes a day or so to feel better, and that they do feel weak straight after. However, I also know of some people who have bad reactions to IVIG and they have had to stop – I have heard it discussed before that certain people react better to certain brands of IVIG. (who knows why). As I say, I dont know cause I dont have it done, so I hope some post to let you know there side effects, if any.
AnonymousMay 10, 2006 at 9:03 pm
hi rich & welcome,
each of us is unique & no one knows how long nor to what degree you will recover. ivig is working if you get no worse. with time you will make recovery. if it is cidp that you have then you will need periodic ivig infusions. like when you feel a relapse come on. rest as much as you can cuz overdoing it will feel like an attack coming on but it is not. rest, rest, & more rest is the Rx for that. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 11, 2006 at 12:49 am
I do not have CIDP, I had GBS, but I have heard of plasmapheresis being used for CIDP when IVIg does not appear to be helping. With my GBS I had both, no improvement with IVIg and great improvement with plasmapheresis…..but again mine was not CIDP.
Here’s a link to some CIDP information [url]http://www.emedicine.com/neuro/topic467.htm[/url] that does mention both IVIg and Plasmapheresis as treatment options for CIDP. Oh and this link is to an article from a 2005 GBSFI “Communicator” article on plasmapheresis, it also mentions both IVIG and PP for CIDP…… [url]http://www.gbs-cidp.org/news/2005/article4.html[/url]
my very best wishes to you,
AnonymousMay 11, 2006 at 3:50 pm
Hey Rich and welcome,
Former Pittsburgher 😉 here. If there is ever anything I can help with or answer any questions feel free to email me jerimyschilz at hotmail.com. We are glad you found us, unfortunately we lost alot of valuable information from our last forum. However there are lots of great, helpful people who are here to assist however we can. Take care.
AnonymousMay 12, 2006 at 4:35 am
To add to canuck girl’s helpful links here are 2 more, but of the same information on the UK GBSSG site.
In pdf format ready for printing out. [URL=”http://www.gbs.org.uk/info/cidp.pdf”]http://www.gbs.org.uk/info/cidp.pdf[/URL]
Or in html for ready reading or printing out. [URL=”http://www.gbs.org.uk/info/cidp.htm”]http://www.gbs.org.uk/info/cidp.htm[/URL]
AnonymousMay 12, 2006 at 7:26 am
Rich my post would read exaclly the same as canuckgirl so I am not going to post that about my treatments and having GBS. I live in Pittsburgh, PA and am not too far from you! I hope this rain stops and we get warmer weather.
I have learned so much from this forum and group of caring people. They take time to answer each question. I have noticed that they treat all questions as important. There is no stupid questions! They take time to look up answers and keep up with the most current treatments. I have learned alot from them!
Hope you get something that works for you and your illness. Don’t give up on the first try. It takes time to see results in some cases. Think possitive and prepare for a big change in your lifestyle.
AnonymousMay 12, 2006 at 11:01 am
I was diagnosed with CIDP just over two years ago, and have been on IVIg (with one very short hiatus) since then. As others have stated, each person’s response to IVIg is different. It helps most people with CDIP, but not everybody, and the amount of help varies as do the side effects.
In my case, my neurologist was careful not to get my hopes too high initially. He prescribed a “loading” dose, where I got four infusions in two weeks. After that, we went to once every other week. I had some side effects from the first IVIg brand (fevers, skin peeling) and had to do the whole thing over when we switched.
I did feel better after my first four treatments, but it was not like night and day. From the time that I started to treatments to when I could walk without a limp was at least a couple of months. It took another month or so before I could run.
Now, I’m down to once every 3 weeks and am pretty stable. Overall, I think I have been extremely fortunate.
I think your doctor was trying to be positive. However, he did you a disservice by making it sound as if IVIg is the magic cure that works immediately. Give it time. I hope that you do as well with it as I have.
Diagnosed CIDP 5/04
AnonymousMay 12, 2006 at 5:28 pm
Sorry you are having some much difficulty. There are no rules that cover everybody. It took six months and lots of different tests and no dx until second neuro redid test done four month previously and saw changes that convinced him that I had CIDP. By then I was pretty weak and using a cane. First IVIg was two days inpatient and no improvement. 30 days later has another one day IVIg treatment plus started 80mg of Prednisone and started seeing improvments. Continued both every 30 days until I had a setback when they changed the brand of IVIg I was getting. I then did two months of double my IVIG with the correct brand and saw immediate improvement. Plus I’m reducing my steriod intake each month. My point, learn as much as you can. If something isn’t working, speak out LOUDLY. I’ve probably spent $50,000+ of the insurance companies money. You also might want to see if there is a neuro in Philadelphia more knowledgeable. I’d be happy to talk to you if you wish. 888-949-0076 my dime.
AnonymousMay 12, 2006 at 11:07 pm
I have been on monthly treatments of I V I G for 3 years 3 mornings each session. At first it felt like I had gotten a shot of liquid Wheaties. Made me strong. But as I got better, the feeling was not powerful. Everybody had a different body chemestry, and fortunately I had no nasty side effects.This spring thr neuro suggested that I go longer between sessions , so I tried 6 weeks. Was also reducing prednisone. Wow , did I get done in. I am now trying to build myself back up , am back to every 4 weeks. It takes about 24 t0 36 hours for it to kick in. By the end of the third day, and it’s 24 hours, I feel stronger again. But I truely need it again in 4 weeks. I have never had to change brands. However, What I get is IVIV – G. I know there is an I V I G – A. Don’t know if there are any between.
Best of luck finding just the right thing for you. You might want to try a teaching Hospital.
AnonymousMay 15, 2006 at 12:07 am
Started IVIG last year May 2005 at 40 grams for 3 days in a row every 2 weeks (it was suppose to be 50 grams a day but I was too sick to do that).Where the time went I don’t know.
I went from using 2 forearm crutches to walking on my own a lot. I’m not well but much better. I try to do too much and then I’m on the sofa paying for it. Remember to listen to your body.
My neuro believes in trying IVIG in large doses and it is a wonder drug for me. Good Luck.
Keep reading/asking questions/being positive.
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