There is some differences in the treatment of GBS/Cidp. Can’t remember offhand what that is.
I do like that you mention about the 3% reoccurence of gbs. Doctors often just go right ahead and call it Cidp by empirical defination instead of symptoms and facts presented by the patient.
hi carolyn. i was misdiagnosed at first and went 7 months untreated. let me clear that up a bit. i was properly diagnosed at jefferson hospital in philadelphia. i was given ivig 5 consecutive days. after the first treatment, my vision came back. i was still mostly paralyzed, but i knew i’d somehow be okay when i could see clearly again. when i was released from jefferson, my neuro. told me i was misdiagnosed and this was all in my head. i went 7 months w/o treatment. still paralyzed, went to get a second opinion. was told i had gbs. he sent me to a neuromuscular specialist who confirmed the gbs. he quickly and aggressively put me on, ivig, cell cept and cytoxan. (chemo.) he said with the nervous system, whatever doesn’t return in 18 months to two years, probably never will. i’m now approaching my 7th anniversary of gbs. i’m now on permanent disability, asleep from the nose down and some body parts are permanently paralyzed.
all i can suggest is, please keep your positive attitude. i have one and i believe it helps. keep fighting hard. physical and occupational therapy are a MUST. keep doing the treatments. they may not feel as though they are working, but keep up with aggressive treatments until every avenue has been exhausted.
you are in my prayers. feel free to private message me if you wish. keep fighting my friend.
Hi again Linda,
This is absolutely aweful. You should not have to be going through this. Your plan is sound. Wait Til Monday. If you can’t get things rolling, the ER at Duke will pobably acess the severity anyway and hopefully deem you serious and take you in immediately.
I know you hate to fly but did you call Karen at HUP with Dr. Brown, He may be able to at least make a call to a colleague at Duke of something if not get you UP Here at HUP where he knows YOU. I know its far but. Let me know if I can help.
All the Best, tim
Has your mother gotten any treatment for the GBS? she definitely should be treated with IV IgG or plasmapheresis. This may help her get stronger. Even if she was treated before, please push to get her treated again if it has been a while. Sometimes people only treat once thinking that GBS is a abrupt onset illness and would not need more, but in the event that she is not getting significantly better at 8 weeks and is so affected, I think you would find most experts in the disease recommended retreatment, so please check into it. It can also help her spirits to know that something is going to be done to try to help her more.
In the information pages and especially in the information sent by the Foundation, they clearly state that one treatment does not work for everyone. So the other thing to think about is that if she was treated, should she get an alternative treatment. Steroids are not used for GBS.
Many places are strict about children in ICU settings, but if your mom is on a trach and stable with breathing, ask if the hospital can make an exception to let her grandkids come to visit OR if they can help her go to an alternative place briefly for a combined birthday party with them. If you think it might be tough for your young kids to see her with tubes and IV lines, think about maybe getting a video attachment for the computer so that the kids (and her sons) can talk to grandmom (it does no HAVE to be reciprocal–it will help her to see them even if they cannot see her). I think they are not that expensive and it might do wonders for her spirits. Having the kids call her periodically also can help especially if you can put them on speaker phone and reply for her (like telling them “Grandmom got a huge smile after you said that and did a thumbs up”). Staying connected is so very, very important.
WithHope for a cure of these diseases
I don’t think he treats everyone like me. He wasn’t going to do the 1 per month IVIG until I had this setback. Also I really think he has a special interest in me because my ex-wife has worked for him for the last 15 years and he knows my whole family. Both of my daughters have worked for him at one time or another. I was just discussing my pains with my wife and they are moving around from spot to spot. Like from my ankle to my hip,then my leg,then my back etc……..my neck even aches. My shoulders are almost to the point of I cant get any backwards movement out of them at all. I’m looking out my window at the hot tub wishing I was in it. LOL except for it being 24 degrees here. The percepitation has stopped for the time being and I think travel is still a option. I’m seeing my therapist in the morning and then getting the IVIG treatment. I see my therapist 3 times a week. He took 2 weeks off to go over seas, and the fill in therapists changed my exercises and he was pretty upset about that. I hope that isn’t what got me all screwed up. I don’t want to blame anyone because ultimatly I am in control of what I do.
I really do appreciate all the input from the experience you all have gone through. This is so strange and unstudied that experience is invaluable.
SEVERE GBS 10/11/2006
ABSOLUTLY, your symptoms will continue to get worse as your body continues to attack and kill nerves. Soon you will not be able to walk and maybe not breathe.
Find a nuerologist that knows about GBS; immediately.
I don’t want to be a worry monger but things can happen quickly….
AND if you have GBS; the sooner the progression through your body is stopped the better and more complete will be your recovery.
Hi I’m new to this forum as well. I’m from central PA. and I’m recovering from GBS. I was hospialized in Hershey Med. Ct. and they did a great job with me. They work with you there. Its going to take time. You have to be patience and work back.
See you and praying for you and anybody that has this decease.
My first symptom was on a Thursday night. I didn’t recognise it as anything wrong until the next morning when the numbness was worse. I went to my doctors office that Friday. They took xrays of my lower back and sent me back to work. The next day was worse. Went to the ER. Told me it was something neurological but didn’t want to call in a neuro at that time and sent me home. The next day, Sunday, I couldn’t stand unaided. Went back to the ER, they called the neuro, waited for him for hours and he spent 5 minutes with me and diagnosed GBS. Between first symptom and admittance to hospital was 3 days. I believe they started IVIG that night. Between admittance to hospital and respirator was about 36 hours.