Just some more questions to bug you guys!
AnonymousMarch 17, 2007 at 6:31 pm
Hi guys…So I’m sitting here, over a week after my symptoms began. I’ll see my neurologist again on Monday…just wanted some thoughts and answers from someone who’s been there….
It all started in my legs and stayed in my legs. Freezing feet, bugs crawling around, unable to walk.
I have had 2 IVIG treatments and have seen no change. Oh well. I’m just wondering when I should see some improvement?? And return to “normal”???? Is there any good exercises I should be doing for my weak little legs??
I’m wondering if there’s anyone out there who knows they got GBS as a result of Campylobacter (food poisoning)??
I still have no appetite. I lost over 10 lbs while ill with the campy and have no desire to eat??? I am very small so I NEED to get those lbs back on. I have nothing against food…really!
AnonymousMarch 17, 2007 at 8:09 pm
While I know this is not your 1st post I welcome you to the site.
Some seem to have a very rapid recovery and reasonably complete recovery. Some even past the two years or more are still recovering. One thing for such that on an individual basis it is difficult to predict. A significant number of those diagnosed with GBS do regain mobility and the ability to resume many of the activities they did before GBS.
There are those who have residuals. In my case, fatigue, tingling and general weakness are present.
There are several triggers for the GBS. My onset was triggered by an upper respiratory infection.
The loss of appetite has not been an issue for me. However, there are those who like youself have had that experience.
AnonymousMarch 17, 2007 at 9:59 pm
did the 2 ivig treatments equal 2gm of ivig/kilo of your total body weight? ivig works on 70% of us. recovery just takes longer w/o it. no one knows how long nor to what degree any one gbser will recover. walking, as best as you can, is an excellent exercise. campy is the #1 cause of gbs. drink choc malteds, v hi in calories. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 17, 2007 at 10:02 pm
As John said, there are many ‘triggers’ for GBS, and one of them is Campylobacyer, I think we have quite a few on this forum who feel that their trigger was that.
One thing to remember about IVIg is that it doesnt cure you as such (sorry If im telling you something you already know 😮 ). The job of the IVIg or plasmaph. is to try to stop the damage being done to the myelin sheath, and sometimes even the nerves. In GBS, people generally dont see the ‘quick result’ from IVIg (sorry just dont know how else to say it) that some people do who have CIDP and have IVIg. So in essence it isnt a fix, just something that may be able to speed up recovery and stop damage.
Becca, remember that there are NO stupid questions. I can guarantee you that there are people out there who have the same questions as you, and would love to hear the responses.
AnonymousMarch 17, 2007 at 11:15 pm
NO such thing as a stupid question here!
About your loss of appetite – you may want to try Assure or any of the other nutritional and caloric substitute drinks. Sometimes it is easier to drink something than to swallow food when you aren’t hungry. These drinks are used for people who need nutrition and calories, but for various reasons can’t or won’t eat.
AnonymousMarch 18, 2007 at 12:25 am
Hi Becca: I may have missed your earlier post so don’t know when you started with GBS. I lost my appetite for over 2 months from the onset and lost 30 pounds in that time. I found my taste had changed as well-food tasted funny to me and very disagreeable. I became enemic as a result as well. I drank ensure which I could tolerate 3 x daily and that helped. After a few months everythign returned to normal and I have, unfortunately, gained all the 30 lbs back and more. I think loss of appetite pretty common in the beginning, so do what you can as you move through this period. Best to you, Jeff
AnonymousMarch 18, 2007 at 6:15 pm
Becca, as Jeff mentioned, I think a number of people have mentioned the weight loss at onset of GBS. I lost 10 lbs right off the bat but was convinced it was the hospital food. Two years later, I’m down 45 lbs, some of that was okay, but I am too low now for where I should be.
Try to keep on top of the weight issue. Sudden weight loss can lead to energy loss and that is something you are going to need. Since fatigue will follow you around for sometime to come, be sure you are very conscious about your nutrient intake. It plays a big part in recovery.
AnonymousMarch 19, 2007 at 8:38 am
Good morning Becca.
I also have GBS in my feet and got 5 bags of IVIG in 5 days. I have been less than 3 months out of the hospital and have been getting therpy 3 times a week. In that time I have gone from a wheel chair to a walker and now a cane and can walk alot on my own. I read someplace that the real recovery starts in 3 months. The numbness in my feel started going away about 2 weeks ago. One thing I have been given is patience. I turned myself over to God and said I am yours do as you will. Think postive and every morning look for improvement.You will find it. my prayers are with you and we are the blessed ones.We got treated before it really got bad. but remember all in your prayers as we are a family and walking the same path. Steve
AnonymousMarch 19, 2007 at 11:12 am
I have no idea what triggered the little crazy cell in my body to convince the other antibody cells that I was sick and to start to attack my nerves and work on the sheath to get to the core. But the key is to get new antibodies in your immune system asap and correct the war thats going on inside your body. “i’m sorry if i used to much technical medical terms”;) It’s the only way I know to explain my situation. Really I had no warning to my onset and while in the hospital I lost 37 pounds in 4 weeks. I didn’t start to gain it back until I got home. I’m a chocoholic and I fell off the wagon. I got a couple of extra back that I’m trying to get rid of right now. Oh yea my neuro told me all of those technical terms and he also told me the nerves grow back at a finger nail pace. (kinda glad I’m short legged) 😉 Hang in there and don’t lose your faith , all will be ok.
You must be logged in to reply to this topic.