New with GBS
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August 13, 2007 at 5:31 pm
I was just diagnosed with GBS last week and had IVIG treatments in the hospital. My first visit for PT isn’t until Thursday. I haven’t received anything in the way of instruction for recovery. I have been reading different posts about being careful not to overdo it during recovery. My feet are numb and the numbness runs up my legs to my thighs. This has been the case for about the past week. I am able to walk with a cane. My question pertains to what should I be doing to try to get better. Should I try any exercises? I’m kind of in the dark. Any help would be appreciated.
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August 13, 2007 at 7:14 pm
Hi Jim, Welcome to The Family. Small exercises are good, especially if you haven’t had pt yet. Stretching type, short and sweet sessions, few reps is good. Do you have pain? If so make sure you ask the dr for neurontin, lyrica or an antidepressant. We like to say gbs stands for getting better slowly. Recovery is different for everybody. Some recover quickly, some slowly, and some even slower. Keep a positive attitude and you will be on your way. Ask all the questions you have, or just vent when you need to. Take care.:)
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August 13, 2007 at 8:14 pm
Hello Cheryl,
I am not experiencing pain. My feet are very uncomfortable, but not painful. My fear is that I can tell I am losing all of my muscle tone in my lower legs.
Thanks for the response,
Jim. -
August 13, 2007 at 8:20 pm
Jim, welcome on board!
When did you start with the symptoms of GBS? You seem to be on the right track as your doctor has orderd IVIg, which is really good as some docs dont even give patients that. As Cheryl said, i think its good to try and move your limbs, however you may find it hard at this point to do yourself, if this is the case, ask a family member or friend to help you by taking your legs and moving them in circular motions, up and down etc, your feet too. Thursday is just around the corner and I think it will be great once they get involved. I think you are doing all there is to be done at the moment when it comes to recovery. It may very well be a long and frustrating journey, but that, as you know, is what happens with GBS.
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August 13, 2007 at 8:38 pm
Hello Alison,
I first started experiencing symptoms in the middle of July. I went to my PCP on 7/23 and he treated me for what he thought was a B12 deficiency. When the symtoms progressed up my legs, he had an MRI done of my back and neck on 8/3. After getting the results he got me in with a neurologist on 8/6. The neurologist immediately diagnosed me, but said he was having me admitted to the hospital for testing and treatment. Was tested in hospital 8/8 (spinal tap and nerve conduction test). Received IVIG 8/8 and 8/9. Symptoms have changed very little since then. May be slightly better, but not sure. I work a desk job, so I feel like I should go to work.
Thanks for the response. I’m just trying to figure things out and this sight really helps.
Jim. -
August 13, 2007 at 8:59 pm
Jim, the site is a wonderful source of information and support. Have you registered with the Foundation to get quarterly newsletters? If not, maybe you should as they often have great articles for you to read.
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August 13, 2007 at 9:03 pm
Were you affected above the waist? The nerves have to heal with rest (horizontal) and the muscles need exercise (small movement) to bring back the memory and balance, range of motion and strenght comes back slowly. About work, listen to your body. If you start back to work too soon you might have to work out a short schedule with your boss. You do too much too soon and you will feel it and your residuals will flare up and cause a relapse that will keep you down for a few days. You will learn to pace yourself and rest with the fatigue. Listen to your body and be patient! Wait till you get into rehab before you make a decision….don’t let them work you too long that first few times they probably will not know that and try to rush your recovery not being familiar with GBS. Come here to brag, vent and keep posting to let us know of your progress!
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August 13, 2007 at 9:36 pm
Hello,
The only other place that I was affected was with pins and needles sensation in hands. Mostly fingertips. I will register with foundation for newsletter. Having this forum to discuss the illness really helps a person deal with it.
Thanks all,
Jim. -
August 13, 2007 at 11:01 pm
Welcome to the forums JimMac!! Glad to see you posting. Ditto to everything thats been said, rest, rest, rest, and don’t forget to rest! Take it slow going back to work, as set backs really take their toll emotionally and physically. It sounds as though you have made some wonderful progress! Please keep us updated on how you are doing. I will keep you in my prayers!
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August 14, 2007 at 2:39 am
Jim,
First, welcome to this forum. And I wouldn’t concern myself with doing too much (but rest), until the PT starts. (Thursday?). You were just diagnosed with GBS last week and already scheduled for PT is a great step forward in my opinion. Don’t push it……it appears you are having a great recovery and the PT and OT (for the tingling fingers, etc) will help you very much.
[B]”My question pertains to what should I be doing to try to get better. Should I try any exercises? I’m kind of in the dark. Any help would be appreciated.”………………….[/B]………….Just listen to your Dr., and let the PT and OT therapy work. These people are professionals and will get you to walking, writing, and all the other things that we take for granted. You WILL get better…………just believe that, and don’t try to overdo things, as everyone else on here have said. Have faith and everything will be ok.
Per
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August 15, 2007 at 2:29 pm
Jim,
Welcome to the club!
Did I understand correctly that you only had 2 treatments of IVIG?
The purpose of IVIG is to halt the progression og GBS. The normal treatment is for five doses. Perhaps, because you responded so quickly, the Dr. stopped at two. Fine. However, if you see any signs of a relapse in the next weeks, contact your neurologist immediately.
Bob
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August 15, 2007 at 7:36 pm
Jim,
Welcome to the club!
Did I understand correctly that you only had 2 treatments of IVIG?
The purpose of IVIG is to halt the progression og GBS. The normal treatment is for five doses. Perhaps, because you responded so quickly, the Dr. stopped at two. Fine. However, if you see any signs of a relapse in the next weeks, contact your neurologist immediately.
Bob
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