Don’t be afraid to ask.
AnonymousFebruary 25, 2009 at 1:04 pm
On another thread someone said that they thought of deleting their question because it might scare some people. Please do not be afraid of “scaring” people with your questions or concerns. This site has been a godsend to me and others who felt alone in dealing with this insidious disorder. For over 30 years I have had problems that doctors could never explain, like bouts of fatigue. When I had my initial attack I was told that GBS was a once in a lifetime thing, like having mumps or measles, and that once I recovered I would not have recurring problems. We all know that this is not the case. It has only been in the last 5 to 10 years that doctors have done studies on the long term effects of GBS. We now know that GBS does have long term effects and that there is a post GBS syndrome that can come on years later. We also know that some GBS symptoms recur periodically. If I had known this 30 years ago I would not have been so panicked when I suffered occasional bouts of tingling in my feet or other neurological problems.
This site is the one place we can come to and ask questions that we might not ask a doctor, or talk about fears that we may not discuss with others who do not understand. So please, don’t be afraid to ask anything. We are a rare group of people and only we understand the fear and frustration of dealing with GBS and CIDP.
AnonymousFebruary 25, 2009 at 9:04 pm
I think we find this site after we have experienced the horror of GBS. So most of our questions would not scare anyone. PLus there are so many different reactions that there is Hope here. We cannot depend on the doctors to give us the truth because many do not know. When I went to the hospital and they told me that they would not give me IVIG or plasmapharesis because I could still hold a cup – couldn’t walk, but my wrists were still working. They did not know it was supposed to slow down the progress of GBS. Since I had had it 20 years previously, I knew more than they did. ANd what they were saying frightened me. So I left. Yep, could barely walk, but it was better than being treated by those who don’t know. And I am SO glad I did.
But I am grateful that I did not discover the book NO LAUGHING MATTER by Joseph Heller until after I was getting better. It was a fairly mild case and did not need to know how bad it could have been. My doctor did not tell me. He just told me that we would watch my condition. Luckily I was taking high doses of vitamin C which was slowing down the progress. WHen I finally started taking glandulars to support my adrenals, GBS stopped. The blood pressure went down so I could get off of my beta blockers and the pain went away. So although I was scared, I had NO IDEA how bad it could have gotten. But I feel that I have some control in that stress brought it on twice, so I Must not allow myself to have stress. I think this site gives us support and some control – knowing what others do to survive.
AnonymousFebruary 25, 2009 at 11:15 pm
I had GBS like Joseph Heller. I was 19, pregnant, and thought for sure that I was dying. At my lowest point I weighed just 95 lbs., ( I am 5ft. 9 in. tall), was totally paralyzed; unable to breathe, swallow or speak. I had double pneumonia, my heart was going crazy and my blood pressure was all over the place. I just could not imagine being that sick and surviving, but I did and my baby was born healthy. A year later I was able to ride a bike and run after my kids. I was lucky. In the ensuing years I would receive calls from people who had a family member with GBS. I would try to comfort them and I always told them that GBS is very frustrating and that the victims of GBS need the love and support of their family and friends……and not just during the initial illness. It is hard to explain the fear, frustration and physical problems of GBS with people who have never had it. I often felt alone even though I had a loving and supportive family. Today I may look fine, but my hands and feet are tingling and my back hurts. Some days I am so tired that I can barely function, but tomorrow I may feel fine. I am
thankful though, because I was able to raise my kids, run a business and now have grandchildren. Having GBS so young, I learned what many people never do; that life is precious and that just being able to drink a coke or take a step is a miraculous thing.
AnonymousFebruary 26, 2009 at 2:53 pm
Hi Boomerbabe, Carolyn and everybody on the forum
I agree that people should not refrain from sharing information or experiences in fear that they may upset/scare the readers. I know that sometimes the information is hard to swallow, it’s hard to read and digest the bad stuff, but I believe that it’s even worse to ignore it. At least if we know what the facts are then we can make better decisions or be better prepared for what the future may bring. At least in my case, the more I read about other people’s stories, the more I understand about my own condition.
This site means so much to me. Here I got a lot of information, advice and emotional support, I keep coming back almost everyday. I don’t know what I would have done without it, I’m so grateful that such a place exists.
The doctors at the hospital all told me that I would make a full recovery and in many ways I did, but my body is not the same and I have residual symptoms (fatigue, tingling sensations when tired/stressed). From reading the forum, I know that the symptoms may stay with me or maybe they’ll go and then come back sometime in the future. Nobody knows for sure how well somebody will recover but I’m grateful that here I got to know about other people experiences.
I think I’ll read the Oliver Sachs book, thanks for the recommendation!
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