GBS has left me numb!

    • Anonymous
      November 9, 2006 at 6:54 pm

      Hello all,

      I am a GBS sufferer in South Africa. I fell victim to the syndrome in May this year, and had a relapse in June. It was rather difficult to handle everything as you all know.

      I am slowly recovering, and discovering new things about the syndrome and my illness daily. After my relapse, my doctors found that I was had no sensation in my body. They pricked me with needles, dipped my hand in hot water, put ice on me, and just about every thing else you could imagine to trigger some sensation. I have had an EMG, and it came back “okay”. My question is, could it be possible to have no sensation? I cannot feel water, the ground beneath my feet, people tapping my back to call me, etc. It is making my recovery THAT much more difficult.

      Is there anyone that knows what I am talking about? I feel as if no-one understands what I am talking about here. My doctors are not as sympathetic as I thought they should be – they have sucked me dry of all my cash, so I think they are not going to bother me for a while.

      What can I do to improve my situation? I need any kind of guidance or advice please. I am sitting in the dark here.

      Thanks very much

      Evan

    • Anonymous
      November 9, 2006 at 7:02 pm

      hi evan, welcome to the family. i know what you are talking about. you have loss the sensory nerves. i am much the same, i can feel touch-whether it be sharp or not i can’t tell you, and i have no feeling when it comes to hot or cold, have to watch the showers closely. my last ncv/emg showed very little problems- absent f waves though. feel free to ask any questions you might have or just vent, its fine with us. take care.:)

    • Anonymous
      November 9, 2006 at 9:57 pm

      Howzit Evan!

      After 18 years, the feeling on the top of my legs, just below the hips, finally started comming back, still feels a little funny though – but for all those years I have had these two huge patches on my legs with no feeling. I have to say that during my illness and recovery I did have feeling in most of my body, and was extremely sensitive to touch.

      Where do you live, and if you dont mind, who treated you? I have a friend who had GBS around the same time as you. When I had GBS, I spent a while in the Princess Clinic in Hillbrow (in the mid 80’s it was a good hospital, not even sure its still open), then transferred to J’burg Gen, via the J.G. Strydom for a couple of nights.

    • Anonymous
      November 9, 2006 at 10:00 pm

      Evan,

      First of all welcome to the family and to the forums, we are sorry you had to find us but glad that you did. I have a few questions for you:

      1. You have no feeling or sensation anywhere? Can you explain that a little better, where did it start and how has it progressed?

      2. What treatments have you had if any? IVIG, Plasmapheresis, Steroids etc.

      3. Have you had a NCV (Nerve Conduction Velocity) test done that you know of?

      Assuming the attack on your myelin coating was stopped with treatment, the main healer is rest and time. The myelin will regrow, albeit slowly.

      We all are here to help, please take care of yourself and if you have any questions, please ask.

      Jerimy

      [quote=evan]Hello all,

      I am a GBS sufferer in South Africa. I fell victim to the syndrome in May this year, and had a relapse in June. It was rather difficult to handle everything as you all know.

      I am slowly recovering, and discovering new things about the syndrome and my illness daily. After my relapse, my doctors found that I was had no sensation in my body. They pricked me with needles, dipped my hand in hot water, put ice on me, and just about every thing else you could imagine to trigger some sensation. I have had an EMG, and it came back “okay”. My question is, could it be possible to have no sensation? I cannot feel water, the ground beneath my feet, people tapping my back to call me, etc. It is making my recovery THAT much more difficult.

      Is there anyone that knows what I am talking about? I feel as if no-one understands what I am talking about here. My doctors are not as sympathetic as I thought they should be – they have sucked me dry of all my cash, so I think they are not going to bother me for a while.

      What can I do to improve my situation? I need any kind of guidance or advice please. I am sitting in the dark here.

      Thanks very much

      Evan[/quote]

    • Anonymous
      November 14, 2006 at 1:33 pm

      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!

      Regards

      Evan

    • Anonymous
      November 14, 2006 at 2:05 pm

      Evan,

      I see you live in Maritzburg. My uncle and Aunt live there, and just over a year after GBS I moved down there for about 10 months, missed my family too much and moved back up to Jo’burg. Not saying I didnt have a good time, unfortunately being a varsity town I had TOO much fun, some good and some bad 😉 . Our family has a small place in Underburg which they all still go to, I miss it so much!

      Do you know if there are any support groups where you are. I know in JHB they had been trying to form a few in the early ’90’s, but I wasnt interested in them at that point, I just wanted to forget and never speak about GBS again.