circulation problems or gbs?

    • Anonymous
      July 4, 2007 at 3:07 pm

      Hi , been a while since I posted. My dad who is 75 has been recovering from GBS since Nov. 2005. – his mobility is still pretty limited- just starting to take a few steps with walker etc. Past week he has more complaints about very cold feet/prickly feet and legs.- mostly knees down. He stopped taking his nerotin about a week ago but I got him him to restart. Since the initial event, he has just been followed by his primary care. We did follow up with a neurolgist in March 2006 after rehab, but they were like- “he will just have to recover in his own time”- basically what will be will be. He is still getting PT/OT and Home health aid from VNA – but nobody specialising in GBS is following him. – how can i best help him?

    • Anonymous
      July 4, 2007 at 4:21 pm

      I had a very mild case of GBS in August 2006. I still experience the painful freezy cold feeling in my lower legs/ankles and have the tingling when I am tired. Sometimes extra activity sets it off, sometimes it catches me by surprise. I think your dad’s cold, prickly feelings are probably GBS residuals.

    • Anonymous
      July 4, 2007 at 8:15 pm

      I’m 20+ years post and still get the tingling and numbness and cold. Being exposed to cold makes it even worse. I have found that taking a Niacin supplement does seem to help. I’m not on neurontin, but am in the process of working through getting some help for these residuals currently.

      From my own experience I would guess that your dad’s symptoms are residuals. But it sure would be nice if his primary care would release the reigns a bit to a neurologist. Keep us posted and wish him well for us.

    • Anonymous
      July 5, 2007 at 12:36 am

      Check with his dr to see if his dose of neurontin can be raised. It can go as high as 5600 a day. If neurontin isn’t helping there is lyrica or antidepressants that can be used also. pt/ot and aqua therapy are good in moderation. Take care.

    • Anonymous
      July 5, 2007 at 4:34 am

      Bob, as others have said his neuropathy is the most likely cause, but at 75 arterial disease must be considered. I would test his urine for sugar to exclude diabetes. If he has hair in his feet then circulation O.K. Raising his foot above his body and lowering down to floor should cause a brief pink flush in the foot. He should hav a pulse on the top of his foot and ideally one behind the inner ankle bone. If in doubt see his doc. DocDavid

    • Anonymous
      July 5, 2007 at 9:46 am

      thanks for the advice-i will follow up and see what is up. We are always amazed at the length and complexity of his “recovery” from this condition.