Hello, I’m new here! A GBS Patient

    • Anonymous
      January 22, 2008 at 11:08 am

      Hi Everyone, I just found this Forum yesterday.
      I was diagnosed with GBS the 2nd week in November ’07. From the first day of the symptoms to the day going into the hospital not even being able to walk was 8 days!
      Spent a week in hospital, while getting the 5 day IV treatment. (not sure what it is called???)
      I was getting progressively better after getting out of the hospital, until my Neurologist changed my meds from 200 mg to 300mg of Nuerontin.
      Within a day or two I broke out with a body rash that covered about 75% of my body.
      Went to a different Doctor (MD), who prescribed two different salves; one being stronger for my hands.
      The rash got worse and complained to the Neurologist again who then changed my meds to 10mg Nortriptyline, where I take 1 tablet each night for a week, then 2 tablets each night for another week, then 3 tablets, and so on.
      Well the rash is very slowly going away but now the tingling and numbness is returning. I now once again have almost zero tactile feedback in my fingers and my feet are nearly all numb. One of the “SIDE EFFECTS” of this med is “Numbness/tingling of the hands and feet”
      I am now requesting a second opinion from another Neurologist.

      Anyone have any thoughts or similar experience?

    • Anonymous
      January 22, 2008 at 3:25 pm

      Hello and welcome to this forum. There are a lot of very helpful people here who can answer some of your questions! I don’t take any of the meds you mentioned so I can’t answer that, but if you have increasing symptoms in your hands and feet, I would get in touch with your doctor. If it is for a day, or maybe you are too tired, that is one thing. But if it continues for a period of time or gets worse, you might need to see if something else is going on. Take care…

    • January 22, 2008 at 7:12 pm

      I beleive you mentioned the rash was right after ivig, some on this site have had that allergic reaction. I remember one person saying it took months to go away. As Gabrielle mentioned, I would go to the doc regarding the tingling. If more ivig was ordered, I would ask for a blood test to check your IGg or Iga level (not sure about the right capitilizations letters etc., but the doc will know what you are talking about ) This test will tell you what ivig brands would work best for you. For instance, we had blisters in the mouth and hives along w/ an aseptic meningitis reaction when we took gammaguard s/d, (powder form) but the liquid form of gammaguard works pretty well as long as we follow a rigorous pre med schedule. Good luck!
      Dawn Kevies mom

    • Anonymous
      January 22, 2008 at 10:19 pm

      hi numbfingers & welcome,

      as an aside, even 900 mg of neurontin is usually too little for gbs. possible, but unlikely the neurontin nor nortriptyline caused the rash. odds are your numbness, etc is part of the recovery process & is telling you you must do less & rest more lying down. make sure you lose your pain. it’s debilitating. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 23, 2008 at 1:12 pm

      Thanks to all for your replys.
      Yes, I will rest more!

      Ordered DVD’s and T shirts from the foundation today.