GBS relapse? Looking for help/advice

    • Ben85
      June 7, 2017 at 2:08 am

      My name is Ben. Im 31 years old. I live in arizona. I woke up paralyzed may 14th of last year.. spent 3 weeks in icu and months in rehab. Made a full recovery, (minus a weird, numbness in my hands). Ive moved on with life and been doing good. Recently, (last few weeks) its like ive relapsed. I lost my job due to it.. i deal with pain, lose circulation in my limbs, hands are more numb then they used to be, and the biggest problem is absolutely no energy… i can sleep all day and still be exhausted. I dont know what to do šŸ™
      Its made me really depressed, and angry.. i dont know what to do, has anyone experienced this? Please let me know.

    • jk
      June 7, 2017 at 12:05 pm

      There is on-line literature discussing a rare condition called Recurrent GBS. Medscape says, “The interval between attacks ranged between 4 months to 10 year (mean 39.5 month).”

      The Journal of Neurology, Neurosurgey & Psychiatry states, “Recurrent patients (mean age 34.2 years) were younger than non-recurrent patients (mean age 46.9; pā€Š=ā€Š0.001) and more often had MFS (pā€Š=ā€Š0.049) or milder symptoms (pā€Š=ā€Š0.011).”

      MFS means Miller Fisher Syndrome.

      This only means that it is possible to have a recurrence, particularly at your age. However, GBS like conditions lasting more than 8 weeks are generally considered to have become CIDP.

      Your anger at this condition, subsequent job loss and all your symptoms is understandable. It is fair to say that many members of this forum ,over the years, have experienced what you are having now.

      There is a Center of Excellence in Az. Barrow Neurological Institute 240 W Thomas Road, Suite 400
      Phoenix, AZ 85013 United States of America Suraj Muley, MD – 602 4066213 https://www.barrowneuro.org/

      Many organizations and some Church groups and counties offer free depression group sessions. Consider finding and attending one.

      If Phoenix is too far away, call them anyway and see if they are willing to refer you to someone closer.

      • Ben85
        June 7, 2017 at 2:06 pm

        Miller Fisher Variant is what i had..