Relapse with Guillain Barre??

Marcia,
I got GBS Oct. 07, I made steady improvement with plasma pherisis and therapy through Aug. 08. Since then my feet and legs have gotten worse with tingling and numbness, weighted feeling from knees down, loss of balance, curled down toes and turned in right foot. I am back in the wheel chair most of the time. I have seen my neuroligst twice and had an emg, he says I have not relasped, I have not lost strength and it has not gone into CIDP. I’m not sure he has convinced me, although we do agree on one thing and that is I need braces and more therapy.
Your husband has regressed fast in a short time since being diagnosed.
There are others on the forumn that know much more than I that can answer your questions and give you advice. Keep checking back.
Bless you for being a great care giver to your husband.
Shirley

Hi Marcia, Welcome to the Family. How is his breathing? I can’t see why he was released since he is obviously downsliding for the worse. Not a normal recovery pattern at all. yes fatigue can start him going backwards in recovery, but obviously he hasn’t been able to push himself while he is soo weak. He needs pp or other treatments. Find a neuro who knows about cidp and gbs also. The moment he went backwards in recovery should have been a sign to the dr to give him pp immediately, especially since he continues to deteriorate. GBS strikes and does its damage then recovery begins, and continues, may plateau at times but does not go backwards like he is doing. Call the neuro and move up the appt, if his breathing starts to go, if it hasn’t started already, there would be nothing you could do to help. He should be monitored 24/7. Why did the hospital boot him out soo fast in the first place? Thank you soo much for being such a Great caretaker. Thats a tuff job. It shows what a Wonderful relationship you have. Stay strong Hun!

Hi Marcia,

As a recovering gbs person, I can understand your frustration.. How are you husband’s spirits? I kept a log of my activity and sort of rated my progress and symptoms, including pain, numbness, headache, etc.. If you or he feels he has gone backwards, he really needs to get rechecked asap, and explain as clearly as he/you can what is happening to the neuro.. The have a variety of tests, and treatment plans that can be performed to diagnose and treat us….
I was kind of in a similiar situation as your husbands, where I wasn’t recovering anymore, and received added treatments that has put my problems in remission…. This included ivig and pulse steroids, and a two year recovery period.. (I came down with gbs 10/07 and am still recovering)
Best of luck, Deanop

Marcia I have you and your husband in my prayers. One thing I wanted to warn you about is the therpy.
99% of the therpists have NEVER had anyone with GBS. Question his therpist. Find out how much they really do know. I was my therpist 1st GBS Pt. He did study about it in school and also spent extra time learning. He was good and he and his assistant listen to me. All the therpists learned from him and watching me.
It sounds as if your Neuroligist does know about GBS/CIDP. Remember everyone he comes in contact with in treatment question them 1st. and remember NO FLU SHOT OR NEUMONIA OR TETNIS SHOTS.I got mine from the flu shot.
May Gods blessings and strength be with both of you. (Lakoda)

So sorry for what you are going through. Just a thought about the kidneys and dialysis. Does your husband have diabete? Sometimes certain ivig has sugar in it and could cause issues. Also the rate of infusion could cause issues. You could have a blood test to check your husbands ability to get ivig. Have you had a baseline ncv/emg that you can compare to a new one? With gbs, pt Can cause the fatigue. This is kind of how it works in a simple explanation. For instance, if the foot is affected. the nerves are not allowing the muscles to get the message to work. Let’s say the calf is ok, now the calf does its work plus the work of the foot. If the calf is doing twice the work, it will get fatigued and also not work as well. Now the chain continues up, and the thigh gets stressed. Simple explanation, hope you are not confused. PP is a great idea. If the doc does not like the ivig and has checked your compatiability with it and determined it is not for you, steroids could be added. Also, has there been an initial spinal when the dx was confirmed? Since you have not had ivig in a while, you could get another spinal to see if the proteins are again elevated which would be indicative of a new demylienation therefore changing the dx to cidp. Good luck write back and keep us posted.
Dawn Kevies mom

Hello Marcia, and welcome. The comments so far have been great. I too had gbs around the same time as Dean. Its interesting in that I spent 5 weeks at u of m and was getting pt while in the hospital.I was pretty much in the same boat as your husband, as far as progression goes. My insurance would not let me stay unless I had pt. Well I tried to early on and it was so tireing. My therapist finaly became easy on me as not to push me to hard. Its the insurance thing pressuring the hospitals. Any way , I was released and was very scarred about my recovery. Thats when people started telling me that GBS means getting better slowly. My 8 week appointment with the nuro came and I was worried that cidp might be in my cards because of the lack of recovery. The nuro told me that cidp is not considered untill 6-8 weeks into your recovery.If it is gbs still than steroids arent helpfull. If it is cidp, then steroids and PP are usually helpfull. The Journal is highly recommended. Its been almost 2 years from my onset, and the only issue are my pesky little feet.Hopefully you will get some anwsers soon.

NEVER NEVER EVER THINK YOU ARE A TERRIBLE PERSON. The hardest thing in the world is to be a caregiver 24/7.
Just tell your husband that you cannot do it and you are going to get some relief. He may not appreciate it now, and most likely will try to manipulate you to feel guilty, but that is now. He and you are under a huge amout of stress. It sounds like he is dealing with by wanting you to be there, (maybe he sees you as his rock, stability, his port in this storm)
When he and you are mot under so much stress he will be able to see that you cannot he there all the time.

Ask at the hospital if there is a social worker attached. She/He will be able to direct you to a suppor system. ie: relief help

If you are a member of a church call them for support!

Remember, things are said when you are in a stressfull situation that would not be said normally.

Your husband may be more comfortable with a stranger helping him than having someone he knows.

Again:
UNLESS YOU PUT ITCHING POWDER IN THE URINAL; YOU ARE NOT A BAD PERSON

🙂 Hi Marcia,

No one thinks you are a terrible person on this site.. We all know what the caregivers go thru.. I was almost totally dependent on the Mrs’s for care after I came down with gbs.. Depending on the outcome of tommorrow’s visit. I would consider and utilize outside help.. This could include someone coming into the home, assisted living in short term?, friends, neighbors, etc…
Use what ever help you think you need so you do not become a basketcase..
Best wishes
Deanop

Glad you found some solace in the sight. 99.9% of the time people are beyond supportive. I have come here many times especially in the begining and have been encouraged and guidied. If the doc does not have the admission ready today, I would suggest you call 911 and go by ambulance. As a matter of fact, I would do that anyway so that you do not hurt yourself trying to transport him. You mentioned checking your husbands blood sugar, I had inquired if he had diabetes in my last post in response to your comment of him having a reaction to ivig necessitating the use of dialasys. If he DOES have diabetes, steroids which are sometimes used after pp also cause complications with diabetics. IMPORTAT!!!! If you have pp and follow with an ivig brand that does not have a sugar base to it and the infussion is slow, ivig can be used. Gammaguard liquid DOES NOT have sugars in it. I am sure the hosp will know this, but just in case, steroids or ivig have to be folowed by pp. The pp washes everything out. If pp is given it cleans out as many autoantibodies as possible, then if ivig is followed, it can concentrate on a bigger flood of good antibodies and does not have to worry about killing off as many autoantibodies since the pp did the work already. Keep us posted for you and your husband. As a caregiver, I know that feeling of hopelessness you are feeling.
Good luck,
Dawn Kevies mom

If you are still on line, I hope you check this before you head out. I Highly reccomd that you call an ambulance! Anything can go wrong on a three hour drive! I would not take a chance. I think it would be a lot LOT less stress on both of you fi you transport by ambulance.
I am thinking about you, sending you good vibes.

🙂 Hi Marcia…..

I spent a week in hospital 11/07 and had major paralysis.. I was in a wheelchair when I went home.. Within several weeks I was using a walker and strength and feeling slowly returned.. But I think around January/February of that year I started declining….

I declined about 6-8 weeks after my peak of gbs, but not to the extent of your husband… I was given ivig again, and was intermittently given ivig for about 6 months, then I was on pulse steroids and ivig at same time on a regular basis until august of this year. Now I am pill free, and doing pretty good….

Things are rolling good now, but I hate to think where I would have been without more treatments…

In addition, to treatments, I think setting small goals, and sticking to them are important at his stage… I hope he can keep his attitude up… Otherwise, I don’t think I would rule out counseling of any sort early on….

Perhaps you want to look at my earliest posts on this forum to gain insight to how I was feeling early on…. RcMcgrath had gbs the same time I did.. Maybe it will help you…. deanop

Hi Marcia,
I am so sorry I was not on line to answer you sooner. I really feel for what you are going through, I saw it from your husbands point of view. I was diagnosed with GBS/MFV in January of this year. I was hospitalized, had IVIG treatments for 5 days then moved to rehab. I went to therapy and tried my best to do the exercises, etc. but on 2/20, 4 weeks from my admission, I woke up and saw my left hand was acting funny. When I came down with GBS my right hand curled up and my legs and arms wouldn’t move. I was terrified when I couldn’t stand up with the help of the nurses and the side rails in the rehab center. My neuro confirmed I had a relapse and re-admitted me to the hospital. I had IVIG for 5 more days. I was so frustrated. I was sent back to rehab where I stayed until mid-March. I had therapy everyday and eventually could use the walker.
Your husband’s muscles are going through atrophy now and he is going to have to work so hard to get his strength back. I know how hard being the caregiver is on you, I saw all the stress on my husband and he didn’t have to do nearly as much as you. One thing I can tell you as the patient is that I never wanted to ask for anything. I already felt I was a burden. I needed to hear when I made the slightest bit of progress, I needed a hug. I know that may sound funny but I was so lonely from the whole ordeal, that I welcomed a hug to make me feel normal.
You should make sure your husband takes deep breaths everyday, the GBS can affect his lungs. I couldn’t swollow so I needed pureed fod for awhile. You need to keep your eye on your husband’s ability to swollow his food so he doesn’t choke.

Please take care of yourself. You will get through this, it is good you are communicating with each other and sharing your feelings. I pray your husband will get the treatment he needs and get better.
Diane

🙂 Marcia:

I am glad that you guys have taken this decisive action! Just from the tone of your post, it sounds like a world of stress and worry has been lifted off your shoulders, (and your husband’s as well)… Never feel like you are alone.. Now, your husband can get the proper diagnosis, treatment, and rehabilitation, he so critically needs… WE are all praying for his quick diagnosis and recovery; and wish the best possible outcome for him… I’m happy to help anytime, and keep us posted… Deanop

HI MAR, HUN KEEP UP GOOD WORK AN PLEASE STAY STRONG. I got gbs in aug 05 an am disabiled from it perm. I had simialer situation. but I fought tooth an nail I looked like frankin stien but I didn’t quit even though it would have been easy. So from sound’s of this u need to get him to hospital so they can watch him 24/7 until his treatment. This is nothing to mess with. As I learned hard way it strikes when u don’t exspect. I am always scared that i’m going to fall or go in rev but I leave it in GOD’S HAND’S. I am praying now an prayed as i read I know how your husband feel’s. But don’t show fear to him be positive an love an somtimes you have to pep talk him. But as he does get better he may never recover like he was. an this is hard to take I still cry. An the pain is best desribed as hitting your hand’s and feet with hammer as hard as you can. so if he cries out of know were just hold him. it pain an knowing he’s not the same. This still happens to me . I’m only 40 now but this ruinned my life in a way but gave me life in another. It openned my eye’s to how disrespectful I was to other’s in wheel chair’s an walker’s. Wow eye open’er I cried i felt like a terd really I did. but the life I was given I’ve read my bible now 6 or 7 time’s an gave my life back to JESUS i’m far from perfict but i’m forgiven with his mercy. So be ready for a roller coaster of pain tears an all thing’s he took for granted cause it will come rushing in after he get’s back to moving around. just trying to help so you can love himthrew it an keep his will going. pep talk every day all the time give him praise for every thing. cause truth is he’s like a baby he has to learn all over again. an learn his limit’s my wife get’s mad at me cause i go to far an she pick’s me up. some how i’ve found humer in it now i’ll cuss at my leg’s an laugh at same time now.but let’s get ur hubby better. i’m praying for you an your husband. Hun I know it’s hard my wife is tough an she loves me an my three kid’s are tough they were 6,10,9 at the time now they are 11, 14 ,15 an they no when daddy’s in pain cause they get to play x box cause daddy goes nap time every day. have ever since this happend it takes alot out of u . Sorry for rambling but I hurt when I here of other’s having this it makes me cry. I know but when you know how much pain is involved both ways physical an emotional. it hurt’s an still can’t spell or hit right key’s lol. I don’t wish this on my worst enemy. Cause I know the truth I live with it every day 24/7 so i’m praying again as I know other’s are to hope u can read my spelling bad an I hit wrong key’s lot frankin stien hands still lol. night an GOD BLESS GOOD LUCK TO U AN UR HUBBY UR FRIEND JIMMY K.;)

Hi Marcia,
I loved your post, just like Christmas. I often felt it was Christmas when I achieved little things. I smiled and laughed when I first moved my fingers, then I just about had a party when my toes moved. One day at a time, one little success after another, that is how you make it. Like Jimmy, I have trouble typing. My right hand is not what it used to be BUT let me tell you I did make progress after my relapse. I am still making progress everyday. When I first took steps without a cane, my son said I looked like a two year old learning to walk. I use a cane most of the time now but I can walk around the house without it. Please keep us posted on your progress.
Diane

hello, my name is amy i had GBS and was paralyzed from my chin down. Spent 5 months in the hospital then home to my parents house( iwas 38 at the time) do you qualify for in home aid. My paren ts tried to take care of me by themselves but were unable to. I eventually got in home care . CNA who could spend 4 hours a day. They came in the morning and got me bathed and dressed and in my wheel chair ready for the day.Then i was on my own for a few hours. BOth parents were working at lthe time. I got the same CNA each time.(went through a few before getting a good one.) at least you could get a few hours of relief. I eventually went back into a rehab/nursing facilityfor a year because it was too h ard on my parents and i need 24 hour care now i am back home for now. I have CIDP now. and it is progressive so i will be back in a wheel chair eventually( iam able to walk now with a cane or crutcches but am still experiencing tingling and numbness from the chin down) I can only imagine how you feel but you do need to take care of your slef. I was very asngry with my parents at first(when they sent me to the nursing home) but after a week i understood why they needed to do it. I got 24 hour care and rehab on site. the staff was great and they made sure i got out of bed everyday i was the youngest patient and the only GBS patient they have ever had. but they made adjustments for me and improved my physical health.

Sorry you had to find us but welcome. You will not find a grander group of friends….always here to help, give encouragement or a shoulder when needed. I, like you, the caregiver, only the caregiver for my daughter. Brandy went down hill, then a slight improvement and then the bottom fell out. Most of her story is posted on the success stories. I remember 4 days into GBS and being extrememly selfish. I hadn’t slept in 4 days and could no longer function, I threatened my little girl that if she didn’t allow me to sleep for 3 hours that I would leave her in the hospital by herself. I seriously couldn’t see or function any longer. The nursing staff was wonderful, they promised her that they would wake me in three hours and I promised to wake up in three hours. I needed to close my eyes and rest so that I could help her through GBS. The road was rough at times and when Brandy graduated from high school 4 years later I gave her a card with the words from the song “I Hope you Dance” When Brandy graduated from college 4 years later she gave me a card and on the inside were the words from Celine Dion’s song “Because you loved me”. GBS reared its ugly little head again for Brandy 1 month after she graduated, that was 2 years ago, thankfully not as severe. We will keep you, your husband and your family in our thoughts and prayers.

He should have been admitted back to a GOOD hospital. You should have been asking questions before they sent him home. This is nothing to mess with for 1 day, let alone a week or three. I have not read all the replys here, so I hope you already have him someplace else for help. God bless you both.

Drummer

That is great news on your husband and his improvement.
It has been a rough time for both of you.
Will keep Richard in my prayers for continued improvement.
As a caregiver you will need your rest.
Take care and God bless you.
Shirley

MarciaJJ,

My wife and I read your experiences with great interest, having gone through somewhat the same two years ago. Any care giver, and especially a spouse, who deals with a seriously attacked GBS patient has many of the qualities of a saint. But, let me assure that things do get better and you will be deeply appreciated for the sacrifices that you made.

From what you relate it sounds like your husband, while still suffering many of the effects, is on the path of improvement. While every person who is stricken will probably achieve different results in recovery the one constant seems to be that most do improve. For most it is almost miraculous. I had many doubts on the way from being totally paralyzed to where I am today but the changes, which came almost daily after the first couple of months and during the first year, did occur. I now can do most of the things I did formerly albeit it a little slower. I still have the numb feet and lower legs problem but am to able to walk, unaided, for more than 2 miles each day.

We believe that you both have sunny days ahead.