lynn

Your Replies

  • September 14, 2017 at 3:43 pm

    Hi Teaberry,

    I have an infused port on the left side of my chest. The infusion nurses recommended I receive one after multiple attempts during each infusion to get a vein. This went on for about a year or so. I’ve had the port for 2 years now. Good luck!

    May 3, 2016 at 8:09 am

    Jim-LA,

    Thank you for your suggestion.

    May 2, 2016 at 8:23 pm

    Jk,

    Thank you for your response. The last time I had my B-12 levels checked, they were in the normal range. I think I’m going to definitely give the lipoic acid a try. Is there a specific brand you used? Thanks again!

    March 24, 2015 at 10:44 am

    CIDPWhat,

    I was diagnosed back in August 2014 with CIDP. In September, I had my first round of IVIG for 5 days, followed by 3 or 4 days in October and November. My neurologist told me that I would receive treatments for 3 months and then take a break to see how things went. I felt a little better after the last treatment, but right around the holidays I felt horrible and I was starting to get pains in my feet that hurt terribly. I called the neurologist and he put me on 300mg of Neurontin to be taken at night and increasing my dosage every week until I reached 900mg. I went to see him after the first of the year and we started my treatments again in January and I just finished up a few weeks ago. I feel a lot better! And, I’m hoping and praying it stays this way. The neurologist told me he expected me to feel better after the second round of IVIG and that it takes time. I felt the same way as you…what does this mean for my future? I remember asking him when I was first diagnosed, “will I end up in a wheelchair or walking with a cane or something…I’m only 32.” He told me that he didn’t have a crystal ball and he wasn’t sure what would happen but he was optimistic that I would feel better. I respected his honesty and I knew deep down that he couldn’t tell me for sure how this would all paly out. Sometimes I get down when I think about the possibilities of what may occur and then I try to remember that at least I’m still mobile and things could be worse. So, I’m wishing you the very best as well as all others that are suffering from this. God Bless.

    November 10, 2014 at 11:14 am

    Thank you both for your advice. After reading your comments, I’m definitely trying to remain positive.