Father in-law with GBS
AnonymousJuly 6, 2010 at 10:52 am
My father in-law was diagnosed with GBS on June 27th. He woke up that morning and could not move his legs or arms. He was taken to the ER and the first thing the doctors thought was a stroke. It took them 24 hours to figure out what was going on. The whole family was in shock because just under 24 hours he went from healthy to the ICU with a ventilator. We were very worried because he started to have heart problems but he’s stable now. He’s able to blink for Yes or No questions. He’s sweating a LOT and it looks like every muscle in his body hurts when somebody touches it. Is this normal? Also, he got IVIG treatment for 5 days starting on June 29th. This is very hard for all of us and especially my wife since she’s the only child and her parents are not in the U.S (they are in S. Korea).
AnonymousJuly 6, 2010 at 1:58 pm
So sorry your father in-law has GBS.
It is normal with GBS to hurt when you are touched. He has nerve damage going on from the GBS which causes tingling sensations that get aggravated when touched. Some GBS patients can not stand rough material to touch them, blankets, clothes, etc.
Any communication from your wife to encourage and support him will help, letters, get well cards, post cards or a phone call when possible.
Hope he starts making improvement soon.
AnonymousJuly 7, 2010 at 7:55 am
It can start that fast. I walked to bed at 10:00 pm woke up at 4:00 am to go to restroom and could not walk. I could feel the tingling sensations traveling up my legs getting worse. Husband got me to the hospital and I didn’t remember much after that for awhile. I didn’t need a ventilator but did have oxygen and breathing treatments. I had use of my arms and could turn my head, swallowing was affected which caused choking.
AnonymousJuly 8, 2010 at 8:55 am
A lumbar puncture of the spine can give doctor information for diagnosis.
He has already been diagnoised with GBS, they may be wanting to confirm GBS again, compare new test to last test or see if anything else is going on.
His wife should be encouraged to ask questions as to the reasons for each test done on him and anything she does not understand about GBS.
If she is not one to do this, encourage any other family member or friend that may be with her to ask questions.
Ask all the questions you want to, if I can’t help you others on the forum can.
Are they seeing any improvements in your father in-law? The slightest new movement is an improvement.
Will be praying for your father in-law and family.
AnonymousJuly 10, 2010 at 12:06 am
Yes, GBS can put you down in a few hours or days. Now for the hard part; the frustratingly slow pace of recovery. The best thing that you and the rest of the family can do is just be there and make sure that he is aware of every improvement, no matter how small. It sounds as if he is getting good medical care.
AnonymousJuly 11, 2010 at 12:01 am
GBS also came upon me swiftly and completely.
Communication is very important and I posted a message on Oct 23 2009 that gives instructions on how to create and use a poster board for communicating. With two looks of the eyes a letter can be identified and then you can spell out words. There is also an attachment of what it looks like.
If you search ‘communicating’ you will be able to find it.
AnonymousJuly 29, 2010 at 9:05 am
That one finger movement is a start for more. Great!
It took three weeks for me to move my big toe, I was so excited with that one movement.
Is he getting range of motion movements from therapists or hospital staff?
Not being able to move on my own it felt good when range of motion movements were done on my legs.
Keep us updated please.
Thank you for the update, he is in my prayers.
AnonymousJuly 31, 2010 at 5:16 pm
That story unfortunately is all to often the case. I got off work at 4PM, went home and played football with the guys. By 9PM I was in severe pain and the next morning on a ventilator. Spent many days in the hospital trying to figure out what happened, but was diagnosed with GBS very quickly and treated with plasma so it did slow the process. 6 months later and I can now walk with a cane. Still no balance and no feelings in arms and legs but able to enjoy the beautiful days.
AnonymousAugust 1, 2010 at 5:42 pm
If your father in law has lot enough muscle tissue that you notice it, get the doctors on top of that. Surley they know that he has diabetes and that they are treating him and sharing all their information with you.
Muscle athrophy from inactivity is not the same as Ketoacidosis.
Dont want to scare you, but talk to the doctors and be very aware of the diabetes. Just ask a lot of questions so you are not guessing about what is going on with your father in law.
AnonymousAugust 2, 2010 at 12:25 am
Your family, including your father-in-law, are no doubt dealing with something dreadful that you never imagined before it happened. Most everything you describe occurred in my bout with GBS about three years ago–no health problems, immediate onset, delayed medical recognition, intensive care, intubation, intense sensitivity, slow recovery, etc. I would like to reassure you that things do improve. Many are left with reminders but the improvement, while slow, is most often remarkable. I have progressed to the point I can do most everything I did before but have been left with numb feet. However, even at an advanced age, I walk a couple of miles each day.
You should certainly follow the advice about insuring that the medical people are aware and are treating any other physical problems your father-in-law may suffer. However, the weight loss could be related to the GBS. My normal weight is about 185 on a 6ft frame. During three months of hospitalization I lost almost 40 lbs. I have since gained it back.
The only physical therapy I recall during the early recovery was an effort to allow me to stand and make labored transfers from the bed to wheelchair and such. After about six weeks and the first step, the physical and occupational therapy people emphasized a progressive regimen of relearning most motor skills–such as walking, eating, personal care, etc. It was slow but it did come. I think your father-in-law has a good chance to regain his old self.
One thing that would probably help him tremendously would be to locate someone who has recovered and have them visit him. One recovered fellow visited me a few times. Just seeing him gave me hope when I was filled with doubts.
I can also assure you that Shirley (Matteyrae) knows of what she speaks. She is one classy lady who battled this thing under the worst of circumstances.
My message to your family and your father-in-law is that “he will get better.” I have come to realize that this experience, as hard as it is, is probably harder on the family members who are the caregivers than it is on the victim.
AnonymousAugust 2, 2010 at 10:16 am
Thanks for the replies. The doctors are aware of his diabetes. He’s been getting insulin and his diabetes have been under controlled. Good news! My father in-law is able to move another finger and 2 days ago he was able to slightly move his neck!! Today though, he’s having some fever and some muscle pain.:(
AnonymousAugust 4, 2010 at 2:00 am
I had quite a bit of PT while bed ridden and on a ventilator. It is important for a therapist to keep the joints flexible for one thing. Then, any type of assisted muscle movement is helpful. Just know the limits and don’t over due it. I had great PTs who were very perceptive of this even though I couldn’t talk.
AnonymousAugust 10, 2010 at 9:58 pm
I’m so pissed of at this hospital and doctors. I cannot believe what they are telling us. The doctor wants us out of the hospital arguing there’s nothing else they need to do and it’s up to the patient to get better. Another excuse was that my father’s in-law is the healthiest at the ICU so the country (South Korea) is not giving them a lot of money… Can you believe this? It’s all because of money!! My father in law is on the ventilator and these clowns wants us to find another hospital because they are not getting paid enough from the government (South Korea has universal healthcare). It’s been only a month and my father in law is finally moving 2 fingers, he’s able to open his mouth, move his neck and jaws and these ppl wants us out… I’m speechless…
AnonymousAugust 11, 2010 at 7:28 am
If you have to find another hospital and doctor try searching for hospital and doctors that have treated GBS.
Your father in-law is not ready to be released, he is just starting to get some movement. He needs a hospital and doctors that care about the patient first, unfortunately that is not the case where he is now.
AnonymousAugust 24, 2010 at 9:13 pm
It’s been three crazy weeks and my father in law is able to move his neck better. Lately though he’s been feeling some tickling or stinging (like when a bug bites) sensation in his muscles… is this normal?
As for the hospital situation, we are still looking for a hospital that will accept him for more than a month.
AnonymousAugust 25, 2010 at 9:54 am
When I first got GBS all I felt was the horrible tingling sensation and what felt like a tight grip around my upper chest and back and had the lack of bowel and bladder control.
As I read all the postings here of what others felt with GBS I used to tell my husband I was fortunate that I didn’t have all those feelings others were describing and going through.
It seemed that as feeling and movement came back all the sensations others had described came with it. It became a daily occurrence to have spasms, uncontrollable jerks, electric shocks or what I called mini lightening bolts in my back and legs. All of these sensations did lessen over time to once in a while instead of daily.
It is hard to say what is normal with GBS.
Yes, the sensations he is getting most likely are among the many that come along with GBS.
They can talk to doctor about any new sensations he is getting. I have described these feelings to not only doctors but family and others, I have gotten a lot of blank looks on this. Unless they have gone through it or had these sensations it is hard for others and even some doctors to understand it.
That is good news he is getting better movement in his neck.
Please keep us updated as he progresses.
AnonymousSeptember 20, 2010 at 1:27 pm
Hello, just an update. My father in law has started moving his legs (very slightly) a week ago but now is experiencing intense pain in the legs. I am not sure if this is normal or not but the doctor does not seem to be concerned about this. Also, breathing started to improve but it’s too weak yet so the doctor decided to keep using the respirator (with some settings adjusted) until it improves more. It’s going to be 3month next week and it seems like recovery is going very slow 🙁
AnonymousSeptember 27, 2010 at 4:55 pm
I just read all your posts on this thread. Everything you mentioned sounds normal. Long, slow recovery is normal. Pain during recovery is VERY normal. There is pain because the nerves and mylin are healing. There is medication to reduce to pain. The most common is call Neuronton, Gabapentin is the generic. It should be introduced slowly and upped regularly until there is relief. There are also newer medications like Cymbalta and Lyrica.
When it comes to range of motion exercies, don’t forget the back. While I had GBS, I had pneumonia and had to have a lot of x-rays. When the techs came to take x-rays they had to pull me forward to fit the film box behind me. That hurt TERRIBLY! Have the PT and helpers slowly start stretching those back muscles so it doesn’t as much when he can start sitting up.
I am 5 years out and I still remember. If you have any questions, please ask. We are hear to help.
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