new at gbs

hi & welcome,

within reason all you say is typical. the lp can give false negatives. get an emg/ncv. it is always better to get ivig. rest lying down as often as you can.

gene

Hello and welcome Lalacox. You can find a wealth of information and support here on this forum and get an extremely helpful packet of GBS information from the society if requested.

One of the things about GBS that sometimes is unappreciated because it is so rare that doctors typically see only a small number of cases is that it varies a LOT from one person to another–in severity, in distribution and manifestations, and in how it impacts their life. Part of this is that the degree of activation of the immune system against the nerve components (intensity of the assault) is different and probably the target varies as well. Some people have involvement mainly of motor nerves and so are weak, others have problems with sensory nerves (can have pain and tingling) and still others autonomic nerves (and have problems with blood pressure, intestinal or urinary function, etc). Most people have some combination.

I also had a “mild case” meaning that I had to walk with assistance, but could still walk and breath on my own. In asking this question many times because it bothers me so much, I find that most people with GBS have fluctuations in their symptoms based on what they do. There is neuromuscular inefficiency meaning that the muscles and nerves do not talk to each other well like they used to do. Perhaps only part of the muscle is getting the signals to act when the others act and so the parts actually work against each other (because the nerve signal to contract gets to the different parts at different times and probably different strengths than the body has learned and used before). If you “overdo” any muscle by working until it is tired, the amount of fatigue or weakness is way out of proportion to what you would have previously experienced. I told my doctors that it was like climbing a steep mountain to walk when it should feel (because it is) a flat path. It may be that when one side gets weak, you overuse the other side (because you want to keep living your life) and then that side gets weak and takes time to recover. Watch for this and if so, cut down on what you do on both sides so you do not ping pong. Yes it will be terribly flustrating, but rest seems to help healing a lot.

FYI also, a spinal tap often is negative in the first week of Guillain Barre, sometimes up to 10 days into symptoms (because it takes time for the inflammation to lead to shedding of proteins and this is good thing). I have read that up to 10% of people with GBS do not have an elevation in the CSF protein. I have had two spinal taps and neither had an elevated protein.

Classically, Guillain Barre is supposed to be symmetric, but this is also not the case as well, but the weakness is usually relatively consistent from one day to another. i would guess that that bothers your doctors, but it may be as above from trying to keep going. Instead of recovering in a few hours, it takes overused muscles of GBS patients sometimes days and sometimes even longer to recover. Like with running, the worse of the fatigue after muscle use can also be two days later. You have to relearn how to live based not only on how you feel today, but also how you expect you might feel in days. In my high intensity job, I have found again and again, if I overdo today, I will pay for it for days and days.

Stay strong in spirit and develop lots of patience with the change in your life and the difficulties it is for others to understand what it is like. Ask lots of questions here, people are kind and helpful and have lived with this problem and so practical!!!.

WithHope for cure of these diseases.

Welcome!
I too had a mild case and started out with oral prednisone from my pcp. Then it progressed enough to put me in the hospital for 5 days. The neuro did not find anything other than slightly elevated spinal fluid and a monoclonal gammopathy. NCV showed slowed nerve responses. Went on to Mayo for a diagnosis of guillain barre. No treatment at that point as it was 3 months later. It was not a classic presentation, but I have the residuals everyone here talks about and it is easier to go with the gbs diagnosis than to forever wonder what is/was wrong with me. The weakness should gradually get better, but it will hit you every once and awhile. It IS a hard thing to describe to others because it is so overwhelming. Everyone one is different (except in the textbooks). Happy Healing — and glad you found us!

Welcome to the family and it’s nice to meet you. Glad to hear that you are on the road to recovery.

Hi Carla,
I posted a reply on another thread you responded to, I hope you can find.
Dawn Kevies

Hi,
It is under need help by lla80.
Dawn

‘do we require a slower pace for the rest of our lives?’

USUALLY YES.

gene

Lala,

Your very welcome. If I can ever be of any help please contact me. Take care.

Jerimy

carla,

looking over your posts i see you were Dxed w gbs, but didn’t catch if you were given ivig. it should have been given. for a variety of reasons, most not sound, it is not always done. how you feel will not affect your emg/ncv. who does the test is critical.

gene

I’m really concern that after I had GBS in 2004. I can not be the same I used to be where I could run, weight lift, Do different types of exercises. now I can only walk short steps for 1 hour 1/2 half max. and then get tire and the feeling in the next day. I just get frustrated when I feel weak with no energy the following days. and the cold weather seems that I get more muscle pain. I don’t know where I want to be sometimes but I am looking for answers. I’m looking for hope to get 100% recovery. And seems that is not going to happen!

Thanks for advice. I never thought about getting phisical therapy again.
I’m going to ask my doctor, is there away I can get phisical therapy again.
Hopely this work Thanks again.