its been 18 months now

    • Anonymous
      November 25, 2007 at 1:42 pm

      i was in the hospital in july of 2006 with gbs, its now almost 18 months later. i’ve had to move in with my 80 y/o mother, which i hate, but thank her for letting me or i’d be homeless. i still have terrible nerve pain in my hands and feet. i also have swollen ankles and feet, this never happened until the gbs. i go to the neuro every 6 months and all he says is ur doing fine. i’ve applied for social security disability and have been turned down, now i’m waiting for a court date. i also found out i have hiv. i did find the ryan white foundation, they pay the co-pay on my meds, which is a big help. hopefully i’ll get ss disablity soon, wish me luck. and as i always say, hey, i’m alive

    • Anonymous
      November 25, 2007 at 7:16 pm

      Hang in there — this is a loooonnnggg process (as you know). The fact that you are able to post is great! There are lots of people on this forum who know how you feel and it’s great to know we are not alone.

    • Anonymous
      November 25, 2007 at 7:48 pm

      hi t & welcome,

      i wonder abt your doc cuz he should know abt neurontin. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 25, 2007 at 11:15 pm

      Hi T, Welcome to The Family! As Gene stated, You should see about neurontin. Feel free to ask questions or just vent when you need to. Keep after the ss stuff, you’ll get it. Take Care.

    • Anonymous
      November 25, 2007 at 11:32 pm

      Hi T,
      So sorry about your struggles right now. Glad you found us. Hope you find what you need. Welcome.

    • Anonymous
      November 26, 2007 at 11:39 am

      i was on gabapentin, 800 mg twice a day, mow i’m on lyrica, 150 mg, twice a day. the doctor likes it better, both work about the same they provide some relief but doesn’t take all the pain away

    • Anonymous
      November 26, 2007 at 7:16 pm

      Hi T: I take oxycontin in addition to neurontin(2700 mgs) 3 x 10mg daily and it is the only thing to have given me relief from constant pain in my legs. After two years of pain I finally went to see a physiatrist who helped me get it under control. There is no reason to live in pain if we can possible find a way not to. Keep trying-pain is exhausting and can suck the joy out of life. Best of luck, Jeff