If the GBS gets worse, what should I do?
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October 3, 2007 at 2:49 pm
Hello,
My name is Ayut. I’m Thai and 27 years old. When I was a student in the U.S., I was diagnosed as having GBS on August 10th. Now, I’m back in Thailand. At that time, my arms and legs did not have energy or power at all. Even though I did not need to stay in an ICU nor need an artificial ventilator, I felt the numbness throughout my whole arms and legs, including my waist. Then, I got the IVIg for 5 days. After that everything was getting better and better. The numbness was cut down only in the palms and feet’s areas. However, the situation was getting worse again in the week 3 after I got the IVIg. The numbness was moving towards up from my feet and arms to my knees and elbows respctively, but not so far. Also, I could not move my toes and ankles much, and I could not stand on my toes and heels even thought I could do so during the first or second week after I received the IVIg. [B]Probably, I tried to work out too much to recover my muscles. I don’t know it this the problem or not. Or I drank beer and wine for 2 days, but not too much. Or the cold weather is not good for GBS. etc.[/B] [B](I have no idea for this)[/B]
So far, I have met three neurologists and they said the same that I would return to be (at least 80%) normal within 3-4 months. However, it’s has been almost 2 months for me with the GBS. I don’t know how long it will last.
[B]So, if I don’t feel better or I feel worse, what should I do next? Does any body have any valuable information for me? Does the second IVIg work for me? Except IVIg and PE, what kind of medication should I take? What kind of food will help my body heal itself? What kind of excercises should I do? (Now, I have to go to a hospital to do my physical therapy) (and I go swimiming sometimes) Is it normal to feel soar in the back as a result of GBS? (I have felt for 2-3 months)…etc…[/B]
Please advise
Thanks you so much in advance for all information
Ayut
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October 3, 2007 at 4:56 pm
Ayut hello and welcome to our message boards. If you have GBS it will take awhile measured in years not months to let the damage to the nervse heal. I am glad that you are going to the hospital to do your physical therapy! That will help you to slowly gain strenght, but this is an illness that can not be rushed. The nerves have to heal first before the correct and swift signals will get to the muscles. As you continue to do therapy you will be able to do more and more. What you have to remember is [B]NOT to DO TOO MUCH[/B] that is counter productive. The nerves need REST to heal and the muscles need to exercise but this is not aerobic exercise it is very consistant slow movement like Yoga where you move for range of motion, balance and breathing. You are having residuals because you are probably doing too much each day. You should be eating healthy and if you are doing that with a balanced diet there should be no reason to take any supplements. If you are in pain then others can suggest pain meds that worked for them. I did not take any pain meds. I am [B]slowly getting better[/B] which goes along with the recovery with GBS. Healing is based on the damage that was done and also the rate of healing. Listen to your body and only do as much as you can without residuals flaring up each time you exercise. Also keep in contact with your Doctors that know about this illness. I am sure the beer and wine did not help. 😮 Sorry to say! I am sure if you are patient others will have more helpful advice for you too!
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October 3, 2007 at 10:25 pm
hi ayut & welcome,
most often what ails you is caused by doing too much. you must rest big time lying down & do much less till it passes. if you feel it is another gbs attack, the docs can compare a new ncv with an old one you had done & Dx you. if it is worse, then ivig would help. no one knows how long it will take a gbser to recover. w gbs, ivig & pe are the only 2 ‘helpers’. eat healthy, do not over do it. take care. be well.
gene gbs 8-99
in numbers there is strength
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If the GBS gets worse, what should I do?
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October 3, 2007 at 2:39 pm
Hello,
My name is Ayut. I’m Thai and 27 years old. When I was a student in the U.S., I was diagnosed as having GBS on August 10th. Now, I’m back in Thailand. At that time, my arms and legs did not have energy or power at all. Even though I did not need to stay in an ICU nor need an artificial ventilator, I felt the numbness throughout my whole arms and legs, including my waist. Then, I got the IVIg for 5 days. After that everything was getting better and better. The numbness was cut down only in the palms and feet’s areas. However, the situation was getting worse again in the week 3 after I got the IVIg. The numbness was moving towards up from my feet and arms to my knees and elbows respctively, but not so far. Also, I could not move my toes and ankles much, and I could not stand on my toes and heels even thought I could do so during the first or second week after I received the IVIg. [B]Probably, I tried to work out too much to recover my muscles. I don’t know it this the problem or not. Or I drank beer and wine for 2 days, but not too much. Or the cold weather is not good for GBS. etc.[/B] [B](I have no idea for this)[/B]
So far, I have met three neurologists and they said the same that I would return to be (at least 80%) normal within 3-4 months. However, it’s has been almost 2 months for me with the GBS. I don’t know how long it will last.
[B]So, if I don’t feel better or I feel worse, what should I do next? Does any body have any valuable information for me? Does the second IVIg work for me? Except IVIg and PE, what kind of medication should I take? What kind of food will help my body heal itself? What kind of excercises should I do? (Now, I have to go to a hospital to do my physical therapy) (and I go swimiming sometimes) Is it normal to feel soar in the back as a result of GBS? (I have felt for 2-3 months)…etc…[/B]
Please advise
Thanks you so much in advance for all information
Ayut
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October 3, 2007 at 10:39 pm
auyt,
see my reply on your other thread. pls, one thread per same post or it makes it hard for you to get coherent replies. thx. take care. be well.
gene gbs 8-99
in numbers there is strength
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