Just need to talk
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July 11, 2007 at 11:15 am
Hi Peggy again, Thank you for the feed back. I want to tell you how good it is to find a place I can ask questions and find more info from other’s that have the same problems. I want to give you a little of my back ground. I was first diagnosed with GBS in the spring of 2004. I had good results with Ivig was in the hospital 7 day’s. Then went home and after 5 months was able to go back to work I did well except I tired easily but was still able to work. In Sept of 2005 I had surgery and six weeks after that I got GBS again this time After 10 day’s in the hospital I had to go to a rehab hospital to learn to walk again. While in the hospital they discovered I had Breast cancer but was too sick to treat at that time. When I got strong enough they did surgery and then I had chemo while on chemo my GBS was gone no symptoms. I was really doing well even after chemo was walking thee miles a day and getting my strength back. Feeling great and thinking thworest was over and I was even starting to grow my hair back which was exciting. Then we were in a car accident a young kid ran a red light. I was not hurt bad just fractured Sternum and the pressure from the air bag and seat belt gave me an abdominal hernia. I had to have surgery because it was so large it went around to my back. 6 weeks after that GBS again but since then they have decided it is CIDP the symptoms are never completely gone I get IVIG once a month and do pretty good I tire very easy and I’m beging to think I will never be normal again some day’s walking is hard I get so weak.
I have been told that I should try hyperbaric treatment by some family and friends but can not find any info on it for GBS or Cidp. The problem is our insurance will not cover it and it will cost 6,000 dollars. I am told it will boost my Immune system but if I understand this CIDP it is caused by my immune system being over active. Have any or you used this as treatment or know anything about this? I know this is a long e-mail I hope it is okay I guess I just needed to have someone to talk to.
Thank You Peggy -
July 11, 2007 at 11:48 am
Hi, Peggy.
No worries with the longish post. It’s helpful for us to get all the facts and for you to tell it all. I’m sorry that you’ve gone through so much. It seems that many of us with autoimmune problems have other difficulties as well.
GBS/CIDP aren’t caused by an overactive immune system but rather by one that’s attacking things it shouldn’t. For some reason it sees our peripheral nerves as foreign invaders, so it’s doing what it would do with any foreign invader–attack and destroy. In GBS it’s a one-off attack; in CIDP, it keeps seeing the pns incorrectly and continues to attack.
Regarding the hyperbaric chamber, I read something about it a few years ago but can’t recall where (if I can find the source, I’ll post it later). I do remember that the treatment was extremely experimental (hence, insurance companies won’t touch it) and the results were inconclusive.
Keep fighting,
Deb
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July 11, 2007 at 1:23 pm
Peggy,
I’m really sorry to hear the awful time you have been having, it good that they have come to the CIDP diagnosis as hopefully the regular IVIg infusions will help you.
I too remember a few years ago the subject of hyperbaric chambers were brought up, and subsequently it has been an ‘on/off’ topic. Cut and past the following thread and read what some members said about it.
[url]www.gbs-cidp.org/forums/showthread.php?t=164&highlight=hyperbaric[/url]
[url]www.gbs-cidp.org/forums/showthread.php?t=1803&highlight=hyperbaric[/url] -
July 11, 2007 at 5:11 pm
[B]Hi Peggy,
We had a discussion about hyperbaric chambers before on the old forums. With many of us reading and checking this subject out,we all concluded this treatment does absolutely nothing for GBS/CIDP. All it will do is take your hard earned money.[/B]
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July 11, 2007 at 6:13 pm
Peggy, From what I understand about the purpose of hyper chambers-its used to force more O2 into the blood, which in turn speeds up the healing process. for instance I just read where an athlete used it to recover quicker from surgery just to get back in time for competition. It just made the recovery faster. I was thinking if only the same thing could be tried on cidp/gbs, but I don’t see where it can really help a whole lot since the nerves regenerate differently then bones/skin etc. There has to be a magic answer out there somewhere:)
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July 12, 2007 at 10:00 am
I guess all though I have done a lot of reading I am not quite understanding CIDP. My doc has talked about putting me on immune suppressant drugs to suppress my immune system, if my immune system is not over active why these drugs. I live in Spokane Washington and I am wondering if there is a doc in the area that specializes in GBS or Cidp may my doc is not up to date on treatment. The first few times they kept thinking I had MS then told me I had emotional problems and needed to see a shrink. I now think I started having trouble in 1998 but got so discouraged cause I was being told I was nuts I just quite complaining till I could not walk then they listened.
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July 12, 2007 at 11:14 am
Hi Peggy,
The way I understand it is Immune suppressant drugs are only used if ivig/pp are not working. The immune suppressant drugs are kind of like a last defense. You have to be careful about germs etc. It is true, it is not really overactive, but confused (the immune system) It just does not know when to shut off and stop attacking.
Maybe since you were on chemo for the cancer before, and it wiped out your gbs symptoms so quickly, the doctor feels it would again be beneficial to try something more drastic than ivig. I do not know your whole story and your continued progression, but once again, maybe the doc feels your ivig is not doing the trick. If you think it is, you should communicate that with your doctor. Good luck, things can ONLY get BETTER from here!
Dawn Kevies mom 😮
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July 12, 2007 at 2:39 pm
Hi, Peggy.
You’re not alone in the initial consideration of MS. Because CIDP is rare, and because its symptoms are very similar to those of MS, most doctors will try to rule out MS (and essentially everything else) before diagnosing CIDP.
You’re also not alone in doctors thinking it’s in your mind. A lot of us can, regrettably, also attest to that.
The reason for using immunosuppressants is that the doctors haven’t found a way of suppressing only the incorrect attacks. In order to stop the attacks, they have to stop the entire immune system. It’s akin to carpet bombing in war: the enemy is firing rockets at us, and we’ve determined that the rockets are coming from someplace within a fifty-mile radius. They may be firing from just one little ten-by-ten-foot room, but all we can determine is that it’s within that fifty mile area. So we destroy everything–both bad and good–within that fifty-mile radius. The immunosuppressants stop the entire immune system from attacking everything which, by default, means they also stop the incorrect attacks on the pns. As Dawn mentioned, immunosuppressants tend to be a last resort, and not without good reason. But I’ve known a number of people for whom they’re a miracle.
Keep fighting,
Deb
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July 12, 2007 at 2:59 pm
Hi Peggy.
And welcome !
I dont know anything about the chamber treatment. I am one with this CIDP that Ivig and steroids do not work. I am weaning now from 90mg of prednisone ev other day and am down to 30mg ev other day. I dont know what is ahead of me for treatment…
I had so many questions in the beginning…I often signed on here to read about others, I came to vent myself. I cried every day b/c I felt so alone with something invisible to others but I knew how bad I felt and how weak I was. These people here always lift my spirits.I am sorry you have been thru so much with GBS and then breast cancer. My mom was diagnosed with breast cancer last year at this time and had surgery and chemo to follow. The chemo made her so very sick that it was a battle to keep her fighting. She did and now she is doing herceptin every three weeks until October. That chemo was awful for her. She had a very aggressive cancer. I cant imagine having gbs/cidp and then cancer and chemo.
You must be a very strong woman ! Good luck to you with everything and vent any time. That’s what we do here. …at least I do.:rolleyes:There is alot to learn about CIDP and here there is alot of knowlege and experience and support.
I am still learning and trying to understand. I try to figure out all of my test results and then end up really scared and cofused. I have finally stopped letting it consume my every thought, tho. I have a life to live and CIDP isnt going to stop it.take care and i hope you get some answers soon !
Stacey
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July 13, 2007 at 6:54 am
Peggy,
Had to do a double take when I saw you were from Spokane. I’m here and thought the closest members were either in Portland or Seattle. I’m seeing Dr Scott Carlson at the Rockwood Clinic on 5th, he’s the one who dxed me{and quickly} plus after being on the site for awhile it seems I’m getting as good of treatment as anybody. He was a little dry at first but I can say I really feel comfortable with him with him now. Feel free to private message me or if you’d like to talk I’m here. I’m a bit excited to know there’s someone here in town who can relate! I just had my IVIg yesterday so am still pretty tired but I always check my messages first thing in the morning.
Pattie
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