I think that you cannot live your life in a buble, go on vacation, travel, enjoy life. Just to be on the safe side, I would bring copies of any records in the event something did happen. Also, I would purchase additional insurance that allows for medivac if needed and hospitalization out of the country. Your insurance may not allow for out of the country treatment. We have BCBS and it did but it would be out of network, and that can add up fast. Furthermore, payment of the difference is usually due up front. When we went on our cruise I purchased this just in case, it was the best security blanket $75 per person I spent.

Depending on where you are going, no immunizations!!!!! Have fun planning the trip!!!!
Dawn Kevies mom

Hi Mike,

Actually the risk of reocurrance is very low, about 3 %. So it is rare to get GBS and even more rare to have a reoccurace. It can happen though. As far as your activity and exercise, this is one I have struggled with since I was quite active. If you do so much exercise, even so you don’t think it is a lot, that you need a day to recoup, it is too much. The first time I did a leg lift set, which I think was about 7 lifts or so of nothing weight, I couldn’t walk for 4 days! So, what I was told, both here, and by the neuromuscular neurologist, is to NOT overdo it. If you exercise to the point of exhaustion, you risk breaking down muscle. My weights are poopy weights just for maintainence of muscle until this all goes away. I will tell you that any core strenghthening you can do will help tremendously. This is training around your waist, hips, torso, etc. You might need to consult a PT though for advice. Good luck and ask all you want here. These are great people who know a lot more than I do:) Gabrielle

Hi and Welcome Mike!

Have you signed up on the gbs-cidp.org website? If you ‘sign-up’, they send you some info, as well as quarterly news letters which are often quite helpful to read. Winter 2007-2008 has just come out, so they will send you a copy of that too. On page 4 there is an article that you would find very interesting called “Does Guillain-Barre Syndrome Recur?”.

I think that the the number one fear in GBS patients for the first few years is the possiblity of recurrence, which obviously can happen, but is very rare as mentioned by gabrielle. I know of patients who live in such fear that they dont want to leave the house or eat food that hasnt been prepared by themselves. Many, many of us have traveled overseas after our attack, and unless you are in a situation where you are in extremely unsanitary situations, or are traveling to third world countries etc. I honestly dont think you need worry too much. Life is so precious, anything can happen, or we can be taken away in a heartbeat. I really believe that you should go ahead and enjoy yourself and just take the usual precautions like drinking bottled water, and making sure you eat fully cooked food at reputable places. I do know how worrying it is, and I am not making light of the worry because I too deal with it often, but as I get older I realize how important it is to enjoy the time you have left.

It is nice that you appreciate your care givers, make sure to let them know how much you appreciate them. My 11 y/o tells me tnak you all the time for taking care of him, and I can tell you it is the best feeling in the world to know he needs me. I am so happy that you have two caring, concearned people in your life, cherish them!
Happy traveling!
Dawn

Jenn,
There are numerous people here who understand what you are going through and are ready and willing to listen and try and help you. Please realize you are not alone. If you need to talk, there are plenty of people who can listen with a very understanding heart.

Life is easier with people who understand what’s going on.

Jenn,
Welcome to the family. There are many that are willing to help, to share, and to listen. Join with us in the process of dealing with this affliction. We can help one another through the life style chances that comes as a result of GBS/CIDP. Looking forward to hearing more from you in the future.

I agree with you that all the testing can be terrifying, especially if doctors don’t do a proper job of explaining the results. But don’t be afraid here. You are among friends.

Hello Jenn,
Welcome to your new family where we feel what you feel!!! I’ve been giving that welcome because it does help to know that you’re not alone. Family and friends are looking at us from the outside and they just can’t understand what we’re feeling on the inside.

We’re here whenever you need to vent, cry, complain or need advice and support.

[IMG]http://img249.imageshack.us/img249/5295/hugsbearroseas7.jpg[/IMG]

Of course you are not alone anyway, we all support you and help you in this “journey”, write as much as you feel you need to, and we pormise to listen and answer with our hart.:rolleyes:

Seems like I skip a day of checking in and all of a sudden our famliy has grown! Welcome, and to you Bubbleboy also!

Jenn911,

Welcome to the Forum! We all understandl what you’re going through and sympathize with you. You can vent, be angry, be sad, have whatever feelings you want with us:) ……some days I have all those feelings!:D

It’s definitely not fair to have cidp (I was dx in July 2000 after 8 months of misery). But, we are great support for each other.;)

Welcome to the forums:D

CathyB

Hello Jenn,

Glad you found us, but so sorry for the reasons you need to come here. I am post GBS and underwent the same tests you mentioned, so I know how scary and painful and exhausting it can be.

Please know that you can come here anytime for information, or just for some moral support. I hope having a diagnosis will at least give you some peace of mind.

Best wishes,

Suzanne

Jenn,

I know how you feel, it is a scary thing that is happening to you. Welcome to our family. Where in Canada are you? I am in B.C. There are quite few of us in Canada that are also suffering with CIDP. Without the support of this site I would be going crazy! I live in a small village and need to drive 2 hours to the hospital to get IVIG. I am going to the doctor tomorrow to ask for another treatment of IVIG. I ‘ll let you know over the next couple of days how I made out. Take one moment at a time and remember we are here to support each other.

Rhonda

The treatment plan for ivig varies for everyone depending on symptoms. Kevies is currently on a 6 week plan for 6 times (protocol I am told) to start a plan and then hopefully this will get the inflamation in check and then you try to stretch it as long as possible in between, This is Kevins plan, some people get it as often as every 7-10 days. Each person is different. Kevin is premedicated with zofran for nausea, benaydrl for allergic reaction and tylenol for pain, every 4 hours (except the benadryl, that is longer in between) I have learned on this forum to continue premedicating 24 hours after the infusion, we will do this his next infusion, because Kevin did not do well with his last infusion 6 hours post. Infusion rate is also a huge consideration, the slower the better. Kevin is a ten year old boy, he can only handle an infusion rate of 50 max. You may be able to handle more since you are older. There has been much talk about steroids as of late being very beneficial in quickly aiding in pain (cuts the inflamation I would assume) To me this is a personal choice, and I currently do not feel it is a choice we need to make since ivig works. You may like the option, and it may work for you, we just are not at that point yet, so I will save it if we ever do need it. This is a very complex condition to understand, ask questions, people will help and answer, this is how I learn every day. I mentioned this to someone else the other day, read all of the posts, it may not be something that pertains to you currently but it may pop up in the future. Good luck! You can e-mail me if you like. Dawn Kevies mom 😮

Sorry, the other part of your question. We occasionally flush with saline if there is burning. At the end of the infusion we flush with heparin to keep the vein open until the next day. Kevins infusions are as follows, 35 grams first day about 8 hours, second day 30g for 7 1/2 hours, third day 30g 71/2 hours. These are loading doses since Kevin gets his ivig 42 days apart which is a full life of the medication. You mentioned dextrose, I can say that we personally do not flush with dextrose, isn’t dextrose sugar? I can’t remember, I do know that the powder form of ivig has sugar in it and people have mentioned on this forum that people have gone into renal failure. The liquid ivig,(premixed, does not contain sugar and is safe regarding renal failure) I believe this would only be pertinent if you are diabetic. I was told by gammaguard, the ivig company that the powder form would no longer be available anyway unless you meet a certain medical criteria. Please remember, these are all things that I am in the process of learning as well, so please investigate. Good luck, I hope I have helped, Dawn Kevie’s mom 😮

How often do you receive IVIG treatment?
I had my last IVIG Feb 26/27. I am going to outpatients on Wednesday for my next treatment. I am there most of the day then I go to a hotel room for the night. I have the second 1/2 the next day. Then I have a friend drive me the 2 hours home.

How is it amdministered?? Through a IV line into your arm
How long are you there for? 2 days most of the day
And, do they flush it with saline or dextrose? Don’t know but I know they flushed with something, I ‘ll ask this time
Please get back to me.
Are you pre-medicated? yes tylenol and benadryl

Hope that helps,
Rhonda

now that you know what it is you are dealing with! There are treatments, the fine tuning of those should be what you have to learn about now tho, for the short and long term.

Ask your doctors if prolonged predisone use is really the best way to go for someone your age. I only say this as I’m going thru a rapid osteporis set of issues [I’m in my 50’s and was very active ’till this’] and prednisone, and the pain meds used for our pains [anti-epilepsy/seizure meds] are well known to decrease our calcium asporbtion abilities at any age.

There are others here who have gotten CIDP at far younger ages than I so I hope more will speak to this issue.

As for getting others to really understand? Well, I do know no one in my family had a clue other than “is that like MS? That’s not good is it?” Well, in a way it is like MS in that the ‘demeyelinaton’ occurs. In MS it happens in the brain, in CIDP it happens at the nerve endings…What I did was send out the NIH info sheets on CIDP to family…and then let them think on it. Another was the ‘diabetic peripheral neuropathy’ info sheet. For some reason, diabetic neruopathies are called Painful neuropathies, when others aren’t. I hope this gets others at least into the neighborhood of what all you are dealing with! It’s a complicated and painful disease. It takes a lot of educating. I know the GBSFI has lots of information that can help folks understand. First tho, YOU have to understand. Then be sure you get the treatments, medications and therapies you need to actually have a life!

I have faith that you will!

Jen

My son Cole has cidp. He was diagnosed 6 years ago. He is 10. We live in Canada. We are in Burlington, Ontario — a small city just west of Toronto and east of Hamilton. Let me know if you are close by.

Betty

In reference to the steriods being used for the IVIg, I take them the morning of the treatment{4mg} to help prevent the menengitis like symptoms I get from the infusion. Some of us, not all, get a nasty headache, nausea, etc. and this helps me from getting those. I do the infusions every 5 weeks along with Cellcept and it seems to be a pretty good job. It’s like a treat to go in for the treatment, the nurses are great, I get to sleep all day while they bring me warm blankets and feed me,lol.

What about having the ivig closer together in addition to iv steroids? Some people mention better results with iv steroids. Some people have ivig every 7-10 days, have you tried plasma pheresis? Since I am still learning as well, can you explain the significance of the dextrose flush? I know that dextrose is sugar, and I KNOW that I have read sugar adds to the inflamation of nerves, it acts as a transporter. I know it seems like a simple concept, but perhaps the dextrose inhibits the usefuleness of the ivig? Have you gotton a FULL loading dose? 2g/kg? I have even read an article that says you can go as high as 3g/kg in younger people. I think I remember that you are 19, perhaps that would fall under the criteria of young? Also, I forgot, what steroid are you taking, there is much mention of methtrexate in conjunction w/ ivig as of late on the forum. I hope you can find the help you are looking for! Don’t give up and stay strong! People on the forum will help you with their questions! Dawn 😮

The lumbar puncture will have an elevated protein level if you have GBS. You could either have a rather mild case of GBS, which could either work itself out on its own, or you may need some IVIG infusions.
If you keep getting better, than worse, you could possible have CIDP, which is chronic, but usually very treatable. The only way to tell (other than getting a sural nerve root biopsy) is to see how the disease progresses. If it goes away with treatment, it is GBS. If it keeps coming back, it could be CIDP.
And no, you are not imagining any of these symptoms. I am so glad you are seeing a neurologist. BTW the MRI was probably to rule out MS, they were looking for lesions on the brain I am sure, which they must not have found.
Pam

Hi PKRN,

Welcome to the forums.

If your spinal tap proteins are over 45 great indicator that you have GBS.

I pray you don’t. If you do have it, make sure you get IVIG or Plasmapheresis treatments [B]ASAP[/B] to stop the nerves from being damaged any further. There is no cure just treatments, physical and occupational therapies and pain meds if needed.

Take care 🙂

Dear pk,

You’re not alone any more and anyone here believes you and understands. Reading your post brought back alot of feelings for me. I sometimes wonder if my experience with GBS would resemble your’s, had I been treated immediately after my diagnosis. Not to scare you, but time is of the essence.

Good luck with your tests. The Neuro will be better prepared to answer the LP question for you. I only know that a high(er) protein level count typically confirms GBS.

Please keep us posted.

Hi and welcome to the forum. 😮

For every question you have, there are many different answers. We have experienced this disease process in a variety of forms. You will read descriptions of acute or subacute GBS, variants, quick or slow onsets, strange sensations and tingling all over — just to name a few. We all experience it differently. That is why GBS is so difficult for doctors to recognize, especially when there is a slow onset and the symptoms come and go without any specific pattern.

Hi pk,

Welcome and we are glad you found us. We are here to help however we can.

Take care of yourself.

Jerimy

hi pk & welcome,

the lp & ncv are the 2 main procedural Dxers of gbs. i perfer the ncv over the lp if only one is done. the lp can read some false negatives. your physical symptoms are consistant w gbs. an mri of the brain & spine can rule on ms. no matter what form of gbs, ivig or plasmapheresis is the first Rx stop. take care. be well.

gene gbs 8-99
in numbers there is strength