GBS Relapse

gabrielle,

3% of us will have another active gbs attack. glad you are going to get ivig. take care. be well.

gene gbs 8-99
in numbers there is strength

5 in-hospital stays and 2 handfuls of stay at home relapses. Don’t get too stressed over a relapse, stress can affect your recovery also. Get plenty of rest. Over doing it in recovery can set you back and can cause a relapse also. Sol usually isn’t used for gbs cases though. is there a chance you have a new dx of cidp? With recent demylenation I would think that would be considered cidp vs gbs. Rest is the best med until your treatment. Take Care.

sorry to hear about this Gab. We were sick about the same time (you were a couple of months sooner than I was) and hearing this kinda freaks me out. I sure hope things work out okay for you! My prayers are with you for a quick turn around and further recovery.

Uppssy, Im sorry to hear this, My hubby is always telling me slow down woman I dont want you to be sick again, he even went today to buy us a mobilehome to get me away from work and to get me to relax, I dont sleep these days with out sleeping pills Im over my head in orders and my daughter that have been helping me in the candles got full day job at her work that she could not refuse to take for she is interm learning to be a “flowergirl” And my hubby is getting scear, last night I could not sleep and was out working again around 7 in the morning then I had clean the house as much as I can.
I have got little weaker in my feet, I walk more like drunk now then I did one month ago, but I think it is only tierdness, I sleep in January 😀

Hi Gabrielle,
We too have gone through the same nightmare! 06 gbs 07 March cidp, o7 june gbs 07 October cidp. This is now the official dx! Kevin too had a relapse after 41/2 months w/o ivig, we thought it was residuals, it persisted, so we had a repeat ncv/emg. As you, there was new demylienation. If there is any new demylienation it is not gbs residuals or so I was told. We have just started our journey of monthly ivig (even though Kevin can go 41/2 months w/o symptoms) The thinking is to NOT let there be any form of relapse between treatments, as this allows additional demylienation. When the ivig is given it allows the myelin to grow back. The problem is, every time it grows back, it makes a new layer, like an oniion. The problem is every new layer makes it harder for the nerves to get the message.

Kevin is going to get a loading dose for a few months and then we will re-evaluate to see if we can go to the standard maintanence dose. They mentioned steroids, but I said NO, he is only ten years old and still developing. I want to save the big guns for when we need them so to speak.

Cidp is a daily journey, with a daily amount of hurdles to jump, but I think we are starting to grasp the idea of cidp and the program if you will. We have no choice, and with the ivig I know Kevin can laugh and play like a 10 y/o is supposed too.

Good luck to you on this journey what ever it may be, gbs residuals or cidp. You can always count on others here to help you through your times of questions,concearns, or fears. I do not know what I would do without this site.
Sincerely,
Dawn Kevies mom

Is there any way, other than the new demyelination on nerve conduction tests mentioned (or nerve biopsy, 🙁 ) to distinguish between worsening because of GBS relapse or an up and down course of CIDP or worsening because of over-fatigue and trying to do too much? I keep hoping my ups and downs are because I work too much, but like others on this thread do not know this for sure. Was it mainly your/your sons disease courses that made the distinction for relapsing GBS in Cheryl and for CIDP in Kevie? Like Helga, I walk badly when fatigued. Can it really take weeks and weeks of resting to recover from fatigue and get back to baseline? If so, I am like Gabrielle and sad about the size of and limitations in my world now.
It has been a little bit of an emotional day for me just thinking about this and then wow it is exactly a topic of discussion. Awesome.

With Hope for cure of these diseases (however they manifest)

I liked Cheryl’s advise to keep yourself calm and out of stress. I know that it is always helpful to have someone, like a spouse, and better yet a Dr to tell you it is not a relapse. I must stress, without stress, the importance of no stress. No pun intended. Well, not much anyway. I worded it like this, hopeing it will help you to remember how important it is for your recovery to pleeze don’t stress. It took me awhile to remember this and hope you are not like me and have to learn this the hard way.
God bless all on these forums.
Drummer

Hello, It is a struggle monthly with me. I don’t know how I will be as far as strength, balance, and fatuige. Right now I am stressing hard and it is starting to show because I am having body aches. Not just one area the whole thing. All you can do is try to relax and let it work out on its own.

Gabrielle and With Hope,
I was not very clear in my post, I apologize.

Upon Kevin’s first dx 10/06, he received a five day course of ivig and YES, he did run out of the hospital. He went in not even able to walk up stairs, get into bed, dress himself, button his pants.
I had to lift him into the Hummer the day we went to the er and he was having difficulty breathing. By the second day of treatment he was literally running down the halls, he even did push ups for the doc.

Also, at this time there were conduction blocks in his hands and legs on the ncv/emg. (incidentally this would be the worst of his four total ncv/emg)

We carried on with life pretty normaly with the exception of not having full stregnth and some tiredness and pins and needles. January arrived and Kevin felt up to trying basketball at school, his best friends dad is the coach and he knew of Kevin’s condition and did not push him, he knew it was just to be with the guys. At the end of January we noticed he was starting to get tired. On Feb 14th, he said he had the jelloie feeling in his legs again.

Doc did repeat ncv/emg no change fom first one . So we determined it was gbs residuals, rest rest rest.
By March it was not better, now the third ncv showed a worsenning, so dx was changed to cidp and treatment was resumed. As with the first treatment, there was instantaneous improvement.

We continued treatment every six weeks from March through June, each dose consisting of a loading dose, not maintanence dose as the full life is 42 days.

July we went to the doc, the improvement was astounding, ncv/emg indicated no blocks, velocities normal, reflexes returned stregnth normal for a 10 y/o boy. Dx back to gbs, thoughts being that cidp would not have healed so rapidly and the set back in March may have been due to all of the gbs antibodies not being gone from initial onset and the extra ivig helped.

Well, here we are to present, almost a year to date. The end of Sept he started getting tired and his hands and legs would get weaker at times and then recover from day to day, called doc, explained about bike riding 3-4 miles, playing football, being a boy. He said lets stop all rigorous activity, give it a month and see where we are.

Well the weakness persisted and we called and had another ncv, his legs were not affected much this time, but stairs were getting a little more difficult and he had NO grip. THE NCV CONFIRMED THERE WAS A WORSENNING NOT AS BAD AS MARCH OR THE BEGINNING BUT WORSE THAN JULY. THIS WAS THE DETERMING FACTOR IN THE RE DX OF CIDP AS GBS RESIDUALS WOULD NOT SHOW UP ON THE NCV. This is what we were told, and based on the patterns of weakness vs recovery I agree.

It has been a very confusing journey figuring out if it is residuals or cidp. I feel that waiting a certain amount of time and resting is necessary. Who wants to be pumping themselves full of drugs if they do not need them. As well, it is important to vigilantly observe any changes and set a time limit. If things have not improved close to where you were before the set back in a reasonable amount of time, I suggest repeating the ncv. If there is a clinical and diagnostic worsenning, ivig seems to be the only option. It could not hurt, but waiting does hurt!!

We were told that the objective is going to be get the current situation under control w/ monthly loading doses (before the full life of 42 days) so we can stabalize. Then after 6-8 months we will reevaluate and see if we can spread them out and move to maintanence doses. We were told that each demylienation or flare up causes your body to go back to square one and the myelin heals with ivig but creates another new layer over the myelin. Apparently this is bad because it hampers the transmission of the message from the brain to the nerve. So we have to find a protocol for Kevin’s particular needs that will not allow a demylienation to take place.

Please set time frames for yourself and if you do not reach where you think you should be, go to the doc. If anything, see if the ivig helps. That in retrospect should have been my light bulb moment. We always gained stregnth from ivig, if it were gbs, that would not have happened.

I hope I have not bored you with this long response, but if I could help one person understand just one point from all of our troubles, it would be so wonderful.. Posting on the site and having responses to my questions helped me to formulate ideas that helped me get to and answer, so I would consider it a gift to myself if I could help someone too!
Sincerely,
Dawn