GBS again

    • April 27, 2014 at 7:40 pm

      I had Shingles on March 15. I now have GBS again. This is the 5th time in my life, 1948, 1958, 1989, 2002 and now 2014. I have had 3 treatments of IVIG this past week. Feel very nervous and weak. Numbness is not as bad as I remember it in 2002. Please pray.

    • April 27, 2014 at 10:04 pm

      Im so sorry to hear this, but stay strong, and we pray for your recovery.

    • April 27, 2014 at 11:30 pm

      Most doctors agree that GBS is almost always a single event; even RGBS rarely re-emerges after 1-2 years. You likely have a chronic form of Peripheral Neuropathy (PN) such as CIDP.

      This is where the auto-immune system remembers how to make antibodies that attack “self”. The condition can lay dormant for years before being triggered by some virus like Shingles. When triggered, our systems can produce antibodies that go on the attack to remove invading organisms from our body. In doing so, they can attack parts of the body itself, usually focusing on soft nerve fibers such as Myelin. This causes weakness and loss of muscle control.

      Here is a summary of the types of cells involved:
      • B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.
      • T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
      • Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.

      One of the best long term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the auto-immune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used. However, when a CIDP attack reoccurs, IVIg or Plasma Exchange is usually given to stop the initial severity of the attack.

      Others, me included, have found that over-the-counter Alpha Lipoic Acid (1200-1800 MG /day) can help reduce reoccurrences too.

      I hope you recover soon.

    • April 27, 2014 at 11:47 pm

      My doctor says I have GBS not CIDP. A lot of people think I have CIPD, but not my neurologist. I have had two neurologists. I can’t take steroids. I have tried them and they do nothing for me.

    • May 6, 2014 at 10:36 pm

      I’m so sorry for you, Barbara! Once is more than enough of this dread condition, I can’t imagine going through it 5 times. Definitely sending prayers for you.