Reply to questions
Hello Jerimy, Ali and Angel,
Thank you for your kind greetings. I am glad that such a forum exists where we fellow survivors can meet and discuss life with G.B.S.
Here are some answers to your questions.
I lost sensation after I suffered a relapse five months ago. After the first few days in hospital, I began noticing that I couldn’t feel it when people stroked my face or hugged me. I thought it was a side effect from the many medications I was on, but I began to notice that I was feeling less. I conducted tests of my own by rubbing different things on my skin. I pointed my dilemma out to my doctor and he told me that it was not unusual for GBS sufferers to not have feeling for a short period. He then gave me an EMG test and I had an okay result. It was not brilliant, but it was not bad either. I was booked into a physical rehabilitation centre where they did more tests on me to test for my sensation loss.
To explain what I feel (or don’t feel) I will try to explain now. I cannot feel anything. I have no sensations whatso ever. I cannot feel hot/cold, tapping on my shoulder for instance, needle pricks anywhere on my body, the ground beneath my feet. However, the human brain is such a wonderful organ. I am using my imagination and memory to tell my brain what the body is touching, so I am now pretending that I am feeling. This helps me to literally walk with more confidence.
In hospital I had plasmopheresis, which is known as Polygam here. I had it for five days, and then five more.
I have not had an NCV test done. I will ask my doctor about it when i next see him.
I am not too bothered anymore about the loss of sensation. I am not as mobile as I should be as a result of the disability, but I am working hard to overcome it. I battled in the beginning of my recovery with walking, but learnt to walk by looking in a mirror at my feet. I now have to look down at my feet when I walk to see that my feet are touching the ground, otherwise I lose balance/control and take a tumble.
I am not able to drive a car anymore either. This is not helping my social life.
I am 23 years old.
Thank you all for your kind support. It is greatly appreciated!