Here we go again!!

    • Anonymous
      August 7, 2010 at 1:11 pm

      The on going ups and downs of C.I.P.D. Twelve years and counting now and many relapses. Well it was the end of May and got my usual IVIG treatment before the holiday weekend and I woke up the next day and couldn’t even get out of bed. Well thought I had a reaction to the soymedrole and wasn’t worried too much about it. Later that day I lost total use of my arms and legs for ummph time but this was a lot different. This time it was almost worse than my initial diagnoses of GBS in 99. Now I couldn’t use my hands at all again and couldn’t even bend the arms. Walking was totally out of the question and thanks to family members to get me too the bathroom and back is a great blessing to have. I was doing my treatments at the v.a. at the time this flare up happened. So I went back to my private neuro again. After four weeks of IVIG”S twice weekly I could get up out of my lift chair on my own.

      These small steps are huge strides for me. Four weeks ago I was using a walker again but couldn’t go long distances but at least I could do it on my own. Then my neuro put me on methatrexate and things started to happen very quickly for me. Got most of my balance back and my knees didn’t keep hyperextending and was stable for once. Well the cane is in use now but I went out with my brothers last night and tried fishing and I was standing on a flat spot and all of the sudden my balance just went haywire and my knees weak. Called my brother over and he helped me and kept me from falling on my face which I have done many of times in the past. I think I just over did it last night but it was great getting out for once. Next time I go I will take my wheelchair to sit in and move around. I am blessed with three great brothers who will do anything for me.

      All i can do is ride the merry go round now. The last few years I average two to three flareups but this last one was almost worse than the first one. I have learned to take it in stride and just keep plugging away. You all take care and keep fighting.

    • Anonymous
      August 7, 2010 at 3:17 pm

      Although I haven’t been through what you have, some of the same symtoms persist. All I can say is my prayers go out to you and your signs of some recovery. Although it has it’s ups and downs we just have to keep up the faith.

    • Anonymous
      August 8, 2010 at 9:27 am

      Hi John,
      It may be time to try a different treatment, there are a few different ones, plasmapherises, steroids, chemo, stem cell transplant and a few others. Iv done the ivig, plasmapheresis, steroids, and Chemo. nothing helped me until the chemo, and now i have reached remission. So just keep plugin away and trying a regiment until it works. I was at the point where i couldn’t even role over in bed and move to my wheel chair or even wash myself in the shower. I was at the point where i would do anything to get better.. and now im happy that i did. I hope you start to get better and not any worse.
      Best wishes