GBS As a Child, Serious Effects Now?

    • LWolf
      March 21, 2017 at 7:52 pm

      Hello!

      I had GBS at age 8. I don’t remember everything, but I woke up on a family trip with double vision and after calling my family doctor I was sent to a big Children’s Hospital in my city. After a lumbar puncture, I was diagnosed with GBS. My disease progressed, and eventually I could not do things like walk on my own. It mostly effected my lower limbs and vision. I remember that I did get an EMG, several more lumbar punctures, and that procedure where they clean your blood with a machine. I had a port put in. I was in the hospital for about a month.

      I left with weakness and an eye patch, but eventually made a full recovery.

      Now I’m 28 years old. I’m experiencing extreme leg weakness and fatigue, to the point where I have started Physical Therapy and they are recommending a rollator. I have pain as well. I have a really hard time getting around.

      My best friend says I have always had muscle weakness and maybe it’s related to GBS. But its getting worse. I saw a neurologist and had an EMG and she said she couldn’t tell I had GBS ever and I didn’t need to see her. I’m seeing my primary care doc Friday and I’m bringing this all up.

      Does anyone have any insight?

      Thanks and sorry for the long post!

    • Jim-LA
      March 21, 2017 at 9:20 pm

      CIDP is the chronic form of GBS. Sometimes it stays dormant or in remission for many years. Once after having GBS, our immune systems know how to produce antibodies that can attack “self”. Usually something triggers the immune system to produce more of those antibodies. Maybe a traumatic event, the flu, shingles, or some other illness.

      An EMG is one of the ways of diagnosing CIDP. But an EMG may not distinguish the disease in its early stages, there needs to be sufficient nerve damage before the EMG can detect it. You may wish to read and share the following publication with your doctor, it lists other diagnostic criteria for identifying the disease:
      https://tinyurl.com/mv7f2r7

      If CIDP is confirmed, you will need to start treatments quickly to reduce the risk of further damage. A few weeks makes a big difference. Because of not getting proper treatment when I first got the disease, I’ve been relegated to living a wheelchair life. I don’t want that for anyone else.

      If your doctor needs to do more testing, or you find yourself waiting for your insurance to approve expensive treatments (IVIg, Plasma Exchange, etc.), see if your doctor will at least start you on a corticosteroid like Prednisone. This class of drugs can help suppress the immune system until a stronger, more appropriate treatment can be approved.

    • LWolf
      March 22, 2017 at 12:19 am

      Hello again,

      Thanks, Jim-LA. After reading this forum and some other websites, I wrote something out describing CIDP with symptoms, treatments, etc and referencing those websites you guys linked. I tried to keep it to two or three pages because it’s a public health clinic, and while my CRNP is amazing, she is not going to sit there and read something over that amount, y’know? I have to be a little realistic.

      Anyway, I sat there and thought about what exactly all of my symptoms were and typed them all out and how they related to CIDP. I hope we are able to figure this all out and get me treatment if this is CIDP. The Neurologist I saw, while at an amazing hospital, was very dismissive despite the fact that I had no reflexes because my EMG was fine.

      I just want this all figured out.

      Does anyone else get an itching feeling and a crawling feeling? Is that normal?

      -L