Husband diagnosed GBS…post IVIG still declining

    • March 2, 2011 at 12:17 am

      My husband was diagnosed with GBS about a week and half ago. Friday night he started the first of 5 IVIG treatments. At the time he could still walk. Since that time, his ability to walk as decreased, he now can hardly get out of a chair. I see him getting weaker every day. It has been a week since the last IVIG treatment.

      Should I be alarmed? His symptoms came on slowly over 3 weeks. He sleeps a lot. His spirits are much better than mine. I am worried that he is going to keep going downhill.

      Have others seen this? Help me, I am heartbroken. What can I do for him?

      Then on top of this, his dad fell this weekend and broke his hip.

      And, is there anyone who has been through this who would be willing to talk with us?

    • March 3, 2011 at 9:15 pm

      While I was in Sacred Heart, Spokane…my GBS wasn’t diagnosed for a few days.. went in on the 7th of Feb, diagnosed on 10th, started IVIG for two days, didn’t work, went into respiratory arrest and was trached and put in ICU. Got plasma-pherisis ) and it worked…peaked at 3 weeks..but was totally paralyzed from eyes to toes..didn’t awake until I was transferred to Idaho Advanced care Hospital…and then only after another 10 days of living inside my head hallucinating…

      In your husbands looks like more aggressive work needs to be done, but don’t worry…as long as you have a good neurologist (I had 5)… you should be fine…as long as they get a bit more into it..and your almost or over halfway to peak…keep all informed and remember…I am 65 years sold and survived this with some difficulty… but I am still a junior here on the forum. Others will most certainly have opinions…and they may well correct me…

      Bob Shannon
      Spokane, WA

    • March 3, 2011 at 11:33 pm

      In my case, I was unable to walk within 24 hours from onset. The ivig didn’t work for me either, so they had to do the 21 day wait to start the plasma phersis, course, during the wait, I was in a drug induced coma, completly paralized, and on a respirator, so the only thing I remember was the worst dreams of my life. It was from March 18 to the middle of may when my brain could finally add 2 plus 2. Now, 4 1/2 years later, the only problems still left are a messed up nerve system in the feet, both sense of touch and muscle control,incomplete sense of balance, ( due to the feet not talking to my brain ),
      and flashbacks from the dreams.
      Keep saying gbs is mostly cureable. I think the biggest problem is getting them to diagnose it as gbs, as it took them 3 days to figure out what I had, due to the fact that only 1 in 100,000 people get it.Hang in ther and keep cool.

    • Anonymous
      March 23, 2011 at 2:16 pm

      My daughter had five days of IVIG and immediately started to make progress. Within another two weeks she had declined to the point that she was much worse than before the treatment. Six weeks later she received another 5 day round and only then did she progress and start to recover. I think that everyone is different. I know how scary this is for you. Hang in there. It’s a long, slow road but there is a light at the end of the tunnel.

    • Anonymous
      March 23, 2011 at 8:28 pm

      I was blessed with GBS. I went for a month thinking it was a back problem until one rainy day I fell getting the mail.
      I was blessed with A doctor who is an expert in her field. She sent me to the hospital from her office and that night they started IVIG. I got 5 bottles and was useing a walker when I left. On monday I started therpy 3 times a week and 4 months later was walking.
      I pray for you as this is very scarey but your husband will start to heal. It is slow and sleeping alot is part of the healing. 3 yrs later I still have times I need alot of sleep. NOW encourage him. If he says look I can move my foot get excited. If he feels he can do something let him try.Tell everyone to be normal around him and please don’t ask and ask what he has.It will be a slow process yet recover can come in a moment to parts of the body. YOU need a rest and start seeing light instead of darkness. There is light ahead and with the help of the great spirit you will be ok. Also DO NOT LET THE DOCTORS B.S YOU. and if you take the flu shots STOP NOW. I got mine from a flu shot. Get on your computer and read all you can on GBS> Blessings and prayers (Lakoda)[/COLOR][/SIZE]

    • Anonymous
      April 10, 2011 at 12:45 pm

      Hello. I was diagnosed with GBS in May, 2010. My symptoms had progressed over 5 days, and luckily my internist and neurologist diagnosed me right away. I did have all the supporting tests: blood, spinal fluid, CT, MRIs, CXR, and I don’t remember what else. 5 days of IVIG and I left the hospital about as bad as I was when I went in, but I could walk with a walker. I improved very slowly over about a month, then started to go downhill again. After another month, I talked to a neurologist who recommended another course of IVIG. About the same time I read on this forum that some IVIG patients were helped by taking Vitamin B12. I asked about starting that, and they said sure. (They did not measure my blood level first.) So I had another course of IVIG (this time as an outpatient), and started taking Vit B12 at the same time. And that time I improved dramatically! That was all at the beginning of August, 2010. By mid September my balance was back, I could walk 2 miles (and have been daily ever since), and slowly some of my other symptoms went away. When I saw a neuromuscular disorder specialist, and told him my story, he asked whether I thought the IVIG or Vit B12 was responsible, and of course I don’t know. I continue to take Vit B12 – I know it doesn’t hurt anything, and it might help?
      Altogether, I know I am very lucky, compared to most who write to this forum. I am 64, a retired pediatrician, and have been incredibly healthy in general. I am hoping that this has just been a little blip in the road.
      Good luck to your husband – and to you. Robin Gilleland

    • Anonymous
      April 10, 2011 at 10:24 pm

      Hi ask your DR to see if they feel the IVIG worked at all for your husband because if it didn’t maybe something like Plasmapheresis could help him. GBS stops getting worse after 4 weeks. If he declines after 4 weeks it may be CIDP like I have. But get talking to his DR about why you feel he is getting worse and why the IVIG doesn’t seem to you like it is working.

      Good Luck