So scared … please help!

    • Anonymous
      February 20, 2007 at 6:31 pm


      I am a GBS recovery case. In short … I got GBS when I was 28 weeks pregnant. I spent a month and a half in the hospital but finally went home with help from family.

      I finally had my son in November and it has now been almost 6 months since my GBS began.

      I have been doing great … almost 100% for the last month and a half or so. My only lagging problem is my face is still a bit drooped on the left side so I can’t smile as big or pucker or lick my fingers. And my hands get tingly very easily but come back to life pretty quick. Pretty minor and I am okay with it if it had to stay like this forever.

      Then on Saturday, I noticed my left side of my face started feeling a little bit numb again. Not bad and kind of off and on. Then this morning I noticed my right side is feeling a bit numb as well. And now I feel like my legs are loosing some strength again.

      I did have a minor cold and a cold sore but I am FREAKED out that it is coming back. When I first got GBS this is how it started … a cold and then a cold sore!

      Could I just be run down? Has anyone else had something similar and it turn out to be nothing?

      Does it sound like it is coming back or just still some symptoms left?

      I dont think I can go through that again … especially with a three month old son who is just getting to know who I am! This would really kill me this time. Please help if you have any thing to share I would appreciate it!

      I have a call in to my neurologist but haven’t heard back yet.

      Thanks again!

    • Anonymous
      February 20, 2007 at 6:40 pm

      Since I got GBS anything that I notice that in any way could possibly be a recurrence has me worrying. As I have weathered several of these “worries” I worry less but still am concerned and fearful of a recurrence.

      Certainly you must determine if it is or is not the beginning of a recurrence.

      My doctors (Neuro and Internist) have “assured” me that recurrences are rare……but then so is GBS and I got that!

      So, try NOT to worry, but don’t feel bad about worrying either! You’ve earned the right.

      Keep us posted.

    • Anonymous
      February 20, 2007 at 6:58 pm

      Sharon if you overdo thing you might feel like your having a relapse. But if your not overdoing things Call your DR get yourself retested for the nerve test. Some people get CIDP which is the chronic version of GBS.
      It could be nothing but better ask and get check to be safer then sorry. If you do have CIDP get IVIG for the treatment.
      Keep us posted.


    • Anonymous
      February 20, 2007 at 9:57 pm

      Hi Sharon

      As has already been mentioned, GBS is rare and reoccurances rarer still – cold comfort I know, because recurrences do happen.

      You are looking after a very young baby. In itself that is tiring. You’re just 6 months on from GBS, so you are still recovering – thus, you have a double whammy of tiredness. On top of that, you had a cold -followed by a cold sore which, if I understand it correctly, is a sign that you are run down.

      I have often read on here of those who, when they get a cold or chest infection etc, notice a return of some of the GBS symptoms – and at a lot more than just 6 months from the initial GBS. Think about it – your face still drooped and you still got those tingly fingers.

      Your body is still on the road to recovery you are looking after a young baby and you are run down – and then you got a cold and your GBS residuals were exacerbated. Well, it does make sense really.

      You are freaking because of the possibility of GBS returning. Well, the chances are that it isn’t. Give yourself some serious TLC. I would bet that you are not good at doing that simply because of the way you wrote:

      “… been doing great … almost 100% … my face is still a bit drooped … my hands get tingly very easily … “I did have a “minor cold” and a cold sore and “could I just be run down?”

      Face drooped, hands tingly – you’re not almost 100 percent – you are still recovering. A ‘minor’ cold? What is a minor cold as opposed to a ‘major’ one? and could I JUST be run down? Being run down is not a JUST situation but it is your body telling you to look after yourself. I wouldn’t mind betting that you thought it’s just a little cold and carried on regardless.

      So, what would your best friend tell you to do|? Carry on or get to bed, taking the baby with you if ncessary, drink plenty of fluids and try not to worry about ‘what might be’.

      The first cold after GBS is the scariest, I thin.
      God bless.

    • Anonymous
      February 21, 2007 at 10:01 pm


      rest, rest, & more rest. the odds are great this is your need. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • February 21, 2007 at 10:19 pm

      I think my wife was more worried than me when I got the first cold. It is definetly scary, and every tingle you ask yourself…is it worse today than yesterday…or now than an hour ago.
      As has been said recurrance is pretty rare. The symptoms and worry are worse when you are tired so try to get as much rest as you can. I had pretty good luck with Tylenol PM, to diminish pain and get sound sleep.
      I’ll keep you in the lenten prayers.

    • Anonymous
      February 23, 2007 at 2:50 pm

      Thanks for all your comments!!

      I am feeling a bit better. I am trying to rest as much as I can … a bit hard with a baby and a house to run though.

      I am not as weak as I was so that makes me feel better. And my face is getting a twitch now so hopefully the numbness is leaving as well.

      So scary though! My husband was pretty freaked out when I told him and then didnt want to talk about it (well that is what it seemed like since he quit asking me how I was feeling). I dont think either one of us can go through that again any time soon.

      I talked with my neurologist who also assured me that it was very rare and not likely that it was coming back.

      One day at a time right?

      Thanks again!

    • February 23, 2007 at 5:35 pm


      I freak out too with every tingle or numbness. It is very scary and I can understand your fears. I had a cold/flu as well and my residuals acted up something fierce (PMS also causes them to act up so I was doubly freaked out). Things are getting back to “normal” for me so I am not as afraid now. That is one thing I really wish would go away…the fear of a relapse!

      As for hubby “not wanting to talk about it”. Remember, men are fixers. They want us to get better and it makes them feel very helpless that they cant do that for us. They are also not as emotionally involved in things as we are. It isnt that they arent concerned with how we are doing, trust me, they are! But, my hubby told me he feels so helpless that he cant make it all go away and he doesnt always ask how I am either. He said that he doesnt because if I dont say anything he assumes everything is okay for the moment. Your hubby worries and wishes he could make it better 🙂

      HUGS! Kiss the baby for us! Wish I could give you a hand for the afternoon sweetie.


    • March 1, 2007 at 2:33 am

      I get lots of weird sensations at times that sometimes make me think that I am under attack again but they always go away after a bit so I don’t worry much anymore about them. Sometimes I think stress triggers these sensations but since anyone who has had GBS has residual nerve damage in various parts of your body these sensations are probably normal. I doubt that your immune system is reattacking your nerves again. A few beers can lift your spirits a bit and help you feel more like a normal person.

    • Anonymous
      March 5, 2007 at 7:41 pm

      Sounds like dis-stress to me, but do be somewhat paranoid in that if you do relapse, the sooner to treatmer the better! I notic when I am over my limits my face muscles throb, and I get a faint clicking sound from my jaw. I use these as ‘red flags’ to stop and take time out. Never the less, I do feel anxious and fear relapse when I over-do it.

      What are your red flags when you cross over that stress line?