Recovery Expectations

    • Anonymous
      August 31, 2012 at 11:19 pm

      Is it “normal” to for my GBS symptoms to get a little worse after completing my IVIG treatment?

      Basically the numbness and tingling in my feet has increased. Most of the other symptoms seem to be pretty much holding steady.

      From what the doctor said, I have a relatively mild case…but don’t want to take anything for granted and have things get worse.

      Thanks so much for any responses.

      Diagnosed 8/20/2012…Received IVIG 8/21-8/25…Came home from hospital 8/28.

      Still feeling scared and overwhelmed…Jason

    • GH
      September 1, 2012 at 1:25 am

      It’s too soon to say. There is a lot of variation in the progression of these diseases, there is variation in response to treatments, and some cases initially diagnosed as GBS turn out to be CIDP. The important thing at this point is to monitor your strength every day. Do you have a physical therapist (who can do this for you)?

    • September 2, 2012 at 11:47 am

      Patience. GH is correct IMO, too soon too tell. Keep stretching and be as busy as you can in PT. Rest. Foot massages feel wonderful.

    • Anonymous
      September 2, 2012 at 3:28 pm

      Thank you both for your replies. I actually went to my first physical therapy sessions the day after I got out of the hospital, on Wednesday. I had physical, occupational, and speech. Going forward I am supposed to have physical and occupational twice a week. I have exercises I am supposed to do at home and I have done them al0ng with as much other activity as possible. I go to the neurologist this coming Wednesday for my first follow-up. I also had my mother-in-law who is a licensed massage therapist give me a Thai massage. It is just so hard to know if I’m doing too much or too little….should be resting more or not. I definitely feel my strength slowly coming back but I guess I’m just frustrated that the tingling/numbness has remained unchanged or gotten a little worse. Most of my tingling/numbness is in my hands and feet with some numbness in my mouth which makes eating a chore. My feet feel like they weight 1,000 lbs. Anyway, I know that I need to be patience…and apparently there is no “normal” with GBS… but just curious if anybody else  had a similar experience. Thanks again for your responses. God bless.

    • GH
      September 2, 2012 at 9:39 pm

      My feet are still feeling weird more than a year and a half out. Mine may never get better, but you should hope for the best. You could make a complete recovery, but not in a few weeks.

      As for the amount of exertion, you must be careful not to overdo it, but to find the appropriate level. When I started twice-a-week outpatient therapy, I mostly rested between sessions. Gradually, I was able to do more and more on my off days. After six months, I was able to get out and do things every day. You need to work at your PT, but not exhaust yourself in between. Go to PT rested up.

      Keep an eye on your leg strength to be sure you are not regressing. Your PT will know how to check that.

      Good luck with your recovery!

    • Anonymous
      September 13, 2012 at 12:49 am

      I am two and a half years out since initial GBS. Everyone comes back differently, both in what is regained and how soon. I am lucky, most of what I lost has come back but like GH my feet and ankles have good and bad days. I am getting used to it and can do about anything but run. I believe you get back what you work for, so make PT your full time job when there. I believe today I am still making progress with the weaknesses I still have through stretching and exercise. Like I said, I feel lucky to have regained what I have and candidly, I would not change what happened to me and the new view on life it has given me. Keep the faith and remain positive.

    • Anonymous
      September 25, 2012 at 7:21 pm

      While I am much better, I have severe tingling in my hands an feet still after 4 years