No improvement, now what?

    • Anonymous
      March 23, 2010 at 11:00 pm

      After 6 months on the ventilator and total paralysis except for eye blinks and slight jaw movements there has been no improvement with a 62 year old lady. There are no health conditions except for the axonal GBS. The mind is all there except for wanting to sleep almost all time. What should we do?

    • Anonymous
      March 23, 2010 at 11:18 pm

      I am responding to your email that says that there has not been any improvement in six months.

      There is a doctor by the name of Robert Armstrong in San Jose CA. He has a world wide reputation and is in charge of infectious diseases for Good Samaritan hospital. Good Sam is among the very best hospitals in the U.S.

      Dr. Armstrong had GB personally and is described by the Good Sam staff as a Dr. House.

      I would contact him and see what he advises.

      He handled my wife’s GB and we feel saved my wife’s life along with ensuring she will recover.

      Hope the above helps.

      If you have trouble reaching the doctor, send me a message with your contact info and I will help connect you and he.

      Len

    • Anonymous
      March 24, 2010 at 6:39 pm

      Hello,

      Have they tried Plasmapharesis, IVIG? Any physical therapy to prevent loss of muscle?

      As far as the tiredness, were there pre existing medical issues or is this from medication she’s receiving as a result of GBS?

      I’m sorry I have questions and no answers, but I am curious as to the type of treatment received thus far.

      Take care,

      Tina

    • Anonymous
      March 26, 2010 at 6:41 pm

      I’m just wondering if the doctors are treating her condition as they would a GBS-patient rather than a stroke-patient? Seems to me that they just expect GBS patients to recover by themselves, but stroke patients get lots more PT and OT.
      Sometimes the GBS gives the same symptoms, with one side of the body being worse than the other with paralysis, coupled by a certain amount of brain damage, causing sleepiness, and lack of function.

      Sorry, I don’t mean to come across as a know-it-all; it’s just that that’s what happened to me; GBS coupled with all the classic symptoms of stroke.
      (Variants?) My brain has been sleepy ever since, though I’ve had lots of improvement in most of my bodily functions.