Fighting GBS

    • Anonymous
      October 5, 2012 at 3:22 am

      My bro is (34yrs old) is the ICU right now fighting for his life because of GBS. 🙁

      3 weeks before hospitalization I noticed that he had a mild cough. He’s taking over the counter cough medicine.

      Wednesday, Sept. 19, 2012 – He informed that he’s going to the hospital for check up and He felt very tired. He drove his own car going to the hospital. Pulmonary Doctor checked him and advised him to stay for the night in the hospital.

      Thursday Sept. 20 (morning) – He complained of numbness on his legs and hands. He complained that his legs seems weaker and weaker. Cant go to the restroom without assistance.

      Sept. 20 (evening) – Legs becomes rubbery and totally lost control on his legs. Doctors were puzzled.

      Friday Sept. 21 – Neurologist suspected GBS transferred him to ICU. He complained about difficulty of  breathing. Neuro prescribed IVIG 30grams per dose for 5 days.

      Our family has no idea what’s GBS and we searched the internet about GBS.

      Saturday Sept. 22 – I arrived in the hospital and went straight to ICU. Lost function of his legs and arms . I was able to talked to him. He told me that it’s getting harder and harder to breath. One hour later, We were informed that he’s in life support – ventilator.

      Sunday  Sept. 23 – 27 – He’s conscious and he can understand us but cant talked because of the tubes on his mouth. Blood pressure went up. We noticed that when he sleeps his eyes is half-open. Neuro told us that his eyes is affected. His vision is not affected. He’s not comfortable with the tubes on his mouth and having difficulty adjusting with it. He’s hallucinating. Still no movement on his legs and arms. He can open and close his hands but very weak.

      Sept. 28 – Tubes removed form his mouth. Doctors performed tracheostomy. He can communicate to us by lip-reading and moving his head. He is much better psychologically today. Still no movement on his legs and arms. He can open and close his hands but very weak.

      Oct. 1 – Still in ICU and on ventilator. Physical Therapist visited him today for some assistive exercise. PT will start daily sessions.

      Today – Complained whole body numbness. He can’t swallow his saliva.

      I’m very worried. I felt that the Neuro doctor don’t have the experienced to treat my bro effectively since he told us that it’s his first time to see a worst case GBS. He is also searching for answers.

      I have a couple of questions. Pls share your experience, support, suggestions, questions. We need it badly.

      – The numbness of his whole body that he’s experiencing today, is this normal?

      – He’s given IVIG 30grams for the first 5 days. Will it helps if he’s given another IVIG treatment?

      – What do you think about Plasmapheresis?

      – How long did you stay in ICU? What’s the signs that GBS is not progressing and he’s on the road of recovery?

      – What kind of meds that helps you?

      The fight continues and I will help him go through this.

      Thank you for your support.

    • GH
      October 5, 2012 at 4:29 pm

      If the neurologist is inexperienced with the most severe cases of GBS, he should be consulting with a more experienced neurologist.

      I have CIDP, not GBS, but it is a similar condition and because the onset in my case was relatively rapid, I was initially classified as GBS. I went through the ICU twice, for a total of about two weeks. The first time was when I continued to deteriorate after a five-day series of IvIg. I was scheduled for plsma exchange, but then my neurologist decided to try a second five-day IvIg treatment. I was out of the ICU only a couple of weeks or less when I began to slide again. Then I got pleurisy I was back in the ICU (via ER) in short order. By the time my infection was under control, I had completely crashed — paralyzed below the neck. I did not have breathing difficulties, however. This is less common with CIDP.

      Then, because my response to IvIg was not satisfactory, and because of the severity of my condition, I was scheduled for plasma exchange again. I was apprehensive about it, but in my condition was ready for anything they thought would help. My fears turned out to be unfounded. I had a Quinton catheter put in my leg, but this was done under sedation and I have no memory of the procedure. I had the catheter for about three weeks, during which I had nine plasma exchange treatments. I never experienced any pain or even discomfort from the catheter or procedure. I started recovering my strength after about six or seven treatments. The catheter was removed without sedation, but it was entirely painless. I spent eight weeks in rehab before I was able to go home in a wheelchair. A month or so later, I was able to get around without a wheelchair. Progress has been slow and steady since. It is almost two years now since the onset of my symptoms.

      Your brother will get through this, and there is a good chance that he will make a good recovery. My feeling about plasma exchange is that it certainly seemed to help me, and if they are going to install a port for it, you might as well get as much use out of it as you can. Five treatments is typical, but I believe that having nine helped me recover more quickly. There is no way to know, however.

      Every person’s experience is different, but the first sign of recovery for me was being able to move one finger independently of the others. Pay attention to details of function, and notice when function improves.

      I do take medication, but this applies to CIDP only.

      He is fortunate to have your help and support, and you should reassure him that people do recover from GBS and often make a full recovery.

    • GH
      October 5, 2012 at 4:41 pm

      Let me add that an excellent book on the subject of GBS is: Guillain-Barré Syndrome — From Diagnosis to Recovery, by Parry and Steinberg. This gives an overview of the entire course of the illness, so is good as the first place to look for information.

    • November 19, 2012 at 5:58 pm

      Any updates on your brother?

      One thing I would add to GH’s replies is to check if there is a local chapter-liason in your area to come and visit. I know it realy helped me to see someone in person who had been through this ordeal.

      Welcome to the new “Normal”


    • September 23, 2013 at 5:03 pm

      I had GBS and the numbness is normal, caused by the assault to your brother’s nerves. Also, his eyelids only half closing, also part of it, I had that with one eye. It can take a few months but that does (or did for me) go back to normal.

      I don’t think that a second IVIG treatment will help and doubt that they would give it to him.

      It is actually almost a year since your post, MaverickOne. Sorry, didn’t notice that. If you come back here, maybe you could give us an update?