Hello..and welcome to our family. I take vitamins as well as neurontin for pain. What kind of treatment did you have when you were diagnosed? IVIG or plasmapheresis? These are both well know treatments that have shown great results for some of us who have gbs. keep in touch and we will all be here for you.

Hi Rhosim,

Welcome to the GBS community. You’ll find you have many friends here. It sounds like you need a new neurologist. Were you ever in rehabilitation for your illness? When my fiance, Ben, had GBS last year, he went to rehab and had something called e-stim (electrical stimulation) treatment on his face for the paralysis. It helped him a lot. As for the fatigue, have you been trying to do too much lately? You might want to lie down and rest until you feel better. It’s hard to control your weight when you’re hurting and not working. Maybe you could see a nutritionist if you feel like your weight is becoming a problem. There are lots of women who have had babies before, during or after GBS. You should visit the thread for expectant mothers on this forum.

Take care!

Shannon

Hi there, I answered you on the other thread. If you have GBS typically they don’t continue the IVIG treatment because the GBS attack has been stopped and you are healing.

Jerimy

Ditto what Jerimy said. My fiance had plasmapheresis for five days and was too sick for IVIG. The doctor said it would have made his condition worse. I’m glad to hear you were getting e-stim, but I’m sorry you’re still having problems with your face. Do you know what level they were doing it at? Ben was all the way up to 8, and I think 10 is the highest you can go.

There’s nothing you can really do to make the nerves grow back any faster, but there have been plenty of people on this forum who have said they noticed small improvements after three to six years. It’s hard to tell because it’s different for everybody. The main thing you can do for yourself is to exercise when you can to build your muscles and rest when you need it. Don’t overdo it, or you’ll slow the process.

Are you on AFOs at all? Since Ben still has paralysis in his left foot, he recently got an AFO (ankle foot brace) and is in rehab working on his balance.

Since Ben and I are getting married in a few months and hoping to have children, I asked his neurologist what the chance would be of our future kids getting GBS. The neurologist said not to even worry about it because it’s very rare for that to happen. I then asked my own doctor, and she said the exact same thing.

Hugs,

Shannon

please hang in there. I am 2 1/2 years post gbs and i still have improvements all the time. the doctors don’t know enough about the illness so please don’t give up. exercise in moderation and rest when you need too. rest means laying down flat on your back somewhere that is comfortable. sitting down does not rest your entire body. you are welcome to e-mail or private message me anytime and i am sure there are others willing to help also. we are a family here.

take care

sherry

Hi

[QUOTE=rhosim05]thank you shannon for the warm welcome…

Yes… I have been rehabilitate for 2 years… i undergo theraphy and electrical stimulation on my face… my face improve a little but it is still sag…

)[/QUOTE]

But you did not say how many days or how much times a day you were given elelcteic stimulation. My case is also somewhat similar to yours. I also got electric stimulation for about a month, daily (except sunday) 20/25 minutes at different nerves/places of the face. I was also given course of prednisone for a few days on reducing quantity when I was undergoing elec.stimulation. By the grace of god, my face became as it was before. Please be sure you will improve slowly.

The rehab Doc had also caustioned me in the past to do the exercises/yoga at least 20 to 30 minutes in the morning and evening daily and not to stop it as being a patient of GBS, the exercises are part and parcel of the life.

Welcome to the site. It has been very helpful to me. Over 5 years ago my bout with GBS started. Still making progress and getting better. There are also others on this site that have made progress after several years.

More would see your question if you post to the GBS adult area.

You are clearly at a difficult place in the journey where you are wondering what the future holds for your ability to walk. Do you have a counselor, advocate, social worker to talk about your concerns with and to come up with a plan to help you adjust, since the outcome is uncertain to you? There are many ways of improving the quality of life without maximum ambulation, but you will need tools to do this. Occupational therapists are a great resource in this area of adaptation.

Use this board to pose questions, like: “I’m trying to get my marketing done, what do you do?” or, “How do you keep the door open while propelling yourself through a door with a mobility aid?” or other daily issues that you may be struggling with. We can learn so much from eachother to ease the stress of getting through a day while our bodies stabilize and heal. You can try my yahoo chat address evenings if you like, and I’ll be happy to share my adaptations with you if you think it will help! Best of luck to you!

welcome to the site. you will find a lot answers and recommendations here like
I have. be patience and don’t overwhelm your self recovery comes along with
time and care and you’re doing the right thing.

sonny, w/gbs 2004

Hi [U][URL=”http://www.gbs-cidp.org/forums/member.php?u=436″%5Drhosim05%5B/URL%5D%5B/U%5D and welcome. While vitamins might be good for you, they will not help the underlying issues. Have your Doctors spoke to you about Steroids, IVIG or another treatment? I am concerned for you because the attack on your nerves/myelin may still be going on. It is good your seeking information, speak with your Neurologist about a treatment plan (meds,rehab, etc)

Take care, we are here to help.

Jerimy