hellaversary

    • Anonymous
      November 10, 2009 at 8:57 pm

      today Nov. 10 2009 is my 3 year dx of gbs. I have also found out that i have been dxed with peripheral neuopathy for at least 1 1/2 years. it’s been over 1 year now and i still walk with my crutches and get fatiqued. i have been in a platue in my therapy for a long time now plus it has been slow or non progressive since that time. Anyone have any suggestions on this? I also heard what you get back at your 2 yr. mark is what your going to get back. thoughts on this? i had a severe case of gbs and they didnt know if i would live or die 2 different times. 1 due to the gbs and the other due to complications. the doctors thought i would be in a bed in a nursing home for the rest of my life. i am now 41. i didn’t let that happen. i still have problems with my focusing and knowing where i’m at when i change directions. loss of position sensory and loss of vibration along with the gbs pain and pain from the periopheral neuopathy. any ideas on this also?

    • Anonymous
      November 10, 2009 at 11:23 pm

      There is the drug trial using ALA for peripheral neuropathy being done in Oregon. And I gather ALA has been used for while for peripheral neuropathy by doctors in other countries. It might be worth discussing with your doctor. Here is a little blurb about the drug trial.
      [url]http://clinicaltrials.gov/ct2/show/NCT00962429?term=Chronic+Inflammatory+Demyelinating+Polyneuropathy+(CIDP)&rank=1[/url]
      alpha lipoic acid
      Drug: lipoic acid
      Subjects will be started on a single daily dose of 600 mg of alpha lipoic acid or placebo for the first 4 weeks and then increased to 1200 mg for the remainder of the study.
      Placebo: Placebo Comparator
      sugar pill
      Drug: lipoic acid
      Subjects will be started on a single daily dose of 600 mg of alpha lipoic acid or placebo for the first 4 weeks and then increased to 1200 mg for the remainder of the study.

      Detailed Description:

      Chronic inflammatory demyelinating polyneuropathy (CIDP) is a progressive disease leading to paralysis. CIDP is an immune-mediated disorder resulting from a synergistic interaction of T cell-mediated and B cell-mediated immune responses directed against peripheral nerve antigens. These immune mediated responses in turn increase the production of reactive oxygen intermediate and cause oxidative damage of the peripheral nerve system. Although corticosteroids, plasma exchange, and intravenous immunoglobulin (IVIg) reduce impairment caused by CIDP at least temporarily and can be used as a first-line treatments, they are not ideal for long-term treatment because of serious side effects and cost. Alpha lipoic acid (LA) is an antioxidant that also possesses anti-immune activity. It is effective in treating diabetic neuropathy. It is also promising in treating patients with multiple sclerosis.

    • Anonymous
      November 11, 2009 at 9:26 pm

      Hi there. I’m so sorry you’ve been having a tough time. If you have had a peripheral neuropathy dx, has a cause been identified or is the dx idiopathic? Do NOT worry about passing the two year mark. I have continued to improve (in fits and starts) past the 2 year point, and the NIH has published a study following gbs patients through 5 years, still showing improvements. I believe the study is on-going. The 2 year number, I think is now considered one of those urban legends. I have pn concerns, and one of my tests showed reduced blood flow to certain extremities. If circulation is the problem, certain meds can really help. Obviously a diabetic response can be somewhat controlled. The University of Chicago, Jack Miller Center of peripheral neuropathy has a wonderful educational website with info on the various conditions, treatment, and advice. I read a great book called Numb Toes and Aching Soles, also Numb Toes and Other Woes. The books are by the same author. These books are an outstanding resource for meds, diet, exercises, etc. I used the info for gbs recovery and pn help. I would recommend the books to anyone who has had gbs or anyother pn condition. GBS plus pn can be very confusing. It may make for a slower recovery, but you may still see plenty of improvement over time!

    • Anonymous
      November 11, 2009 at 10:58 pm

      Hey guys,
      I just realized my hellaversary came and went..Oct. 21 was six years for me. Wow that is so hard to believe. I am very lucky and very blessed. Hope all is well for everyone else.