A Year with CIDP

    • January 2, 2018 at 2:50 pm

      Just a quick round up and a few questions as well. Today, it will be one year since I was hospitalized and received a 5 day round of IVIg. That helped me immensely, and with physical therapy, I started on the road to improvement.

      For the next 3 months, my neurologist at the time, said continued high doses of Prednisone would be all that I needed. Unfortunately, I felt a gradual decline until I was once again using a cane towards the end of March.

      He gave me another 5 day round of IVIg the first week of April and I received no benefit from it. (In retrospect, they administered it way too fast each day. I seem to gain greater benefits when it is given to me slowly).

      I continued to get worse, with trouble walking and numbness returning to my hands. I changed neurologists in late April.

      The new doc ordered IVIg on a monthly basis, with each treatment taking 8 hours or more. I saw an immediate improvement after the first week of treatment. My core body strength returned and I retired the cane within a week.

      Ultimately, we settled upon a treatment of 100mg every other week and he started to taper my Prednisone doses.

      In general, I’m able to work up to 10 hours before I feel fatigue. I can lift fairly heavy objects again and my hands allow me perform more delicate tasks.

      That being said, at the end of the workday, I’m done. I’m exhausted and my feet hurt/feel numb. I end up hitting the hay mostly by 8 or 9 PM.

      I started to play golf again, but there is still something missing from my balance. But I’m playing.

      Here’s the thing as most of you know. CIDP is not a linear progression from illness to recovery. Some days I feel great. Some days I feel horrible. Some days, so-so.

      In totality, I would say I reached and stalled out at 88% of my pre-CIDP self. On one hand, from not being able to walk and wondering if I would have to take disability at work, to walking and working 10 hour days, I’ve made great progress.

      On the other hand, I’ve stalled out.
      1). My feet from the balls forward through the toes always feel semi-paralyzed and at the end of a long day, they hurt and I walk like an old man.
      2). I still get bouts of numbness in hands and fingers and in calves.
      3). My feet still tend catch things (very annoying) and my balance say at a sudden stop or a quick twist is still off.
      4). I forget the official name for it, but my sense of what is around me is still way off. I bump into things and people despite thinking I have plenty of clearance.
      5). Finally, I’ve never mentioned this since it is of a personal matter. My bodily functions are way off. I’m not sure how to put it, but I can’t seem to bring any force during a bowel movement. As a result, I end up going 3 or 4 times a day. And in terms of urinating, the urge to go hits me suddenly and I have to immediately hit the restroom or I can’t hold it.

      Both of these things started when I was hospitalized last year. I thought they would return to normal, but obviously not. Anyone experience something similar?

      The bottom line is that I want to process beyond the 88% barrier. Is that a pipe dream or something time might deliver?

      Anyway, Happy New Year and a fast recovery to all.


    • January 2, 2018 at 10:34 pm

      Hey Bryan,

      Jeff here. I always like reading your posts as we started this journey about the same time. I too am beginning my second year with cidp. Looking back over a year of Ivig treatments I have some reflections, questions, concerns, …you name it. The one constant I keep telling myself is that the first letter of this condition stands for chronic and I must accept that. My initial neuro told me, we caught it early and there is treatment that will stop it, repair it and reverse it, his exact words. It was my infusion nurse that spent the time to explain cidp more fully and stressed that the goal with treatments was to improve to a state of being “stable” and that was the goal. But stable to me meant feeling normal, like I felt before the diagnosis, and, like you the treatments seemed to be making a difference. The treatments do make a difference. In my case it was subtle, did not ever get a real bump from the infusions but got to the point where I was having days, sometimes 3-4 in a row where I did feel normal but as with any chronic condition it would always be back. Back, but not as bad as in the beginning. The other thing I have learned after one year is that this condition truly is an individual one and as much as you and I want to find someone with exactly the same issues and questions, we all seem to have a unique version of cidp. I think that is one of my biggest challenges, not having a clear path to what my future will be and how long it will take to get there and is there even a “there” to get to. My issue has always been the inflammation part of cidp. I can have some pretty nasty inflammation at times and mainly in the hips, thigh muscles and knees. As far as other typical cipd symptoms, I have had little to none for which I am greatful. No issues with walking, balance, numbness. Really at this juncture of the my cidp it is just the inflammation. I can tell you that you are not alone on the personal issues you describe 🙂 and sometimes I am running to the bathroom. Not constant but does happen now and then. From what you describe, I think 88% improvement is fantastic and you should feel good about that. I don’t think anybody can say that going beyond that stage or even into complete remission is a guarantee but I do believe in mind over matter so you must believe that it can get better. I predict my second year of cidp will include possibly trying a different brand of infusion (I would like to try Privigen). I have been on Gammunex since the beginning. I would also like to explore improving my diet more and possibly try mindfulness classes to see if I can deal better with the inflammation. I also should mention that my blood work started showing a below normal white blood cell count but soon after my infusions it would go back to normal. As a result I am now on an every 3 week cycle instead of every 2 weeks and I think my body is adjusting to that, so far so good. Take care my friend and stay positive. I know that is not easy at times but I refuse to let my cidp win and while I do get down and depressed, my remedy is to stay busy and as positive as possible and remind myself that others suffer from conditions worse than mine. So, improve that golf game! and keep giving us updates. Your fellowcidpguy from Houston.

    • GH
      January 3, 2018 at 2:30 pm

      My feet are still like that seven years out. Some residuals are permanent. I just accept it as the new normal.

    • January 9, 2018 at 12:52 pm

      GH, my feet really concern me. Hopefully there is still some healing left to be done.

      The last couple of weeks certainly have me down. While I’ve seemed to have topped out at 88%, I’ve recently dipped to 75% of my pre-CIDP self for the last 3 weeks.

      As a result, I’m more tired in general. I’m having a bit of trouble with stairs and steps. My finer grip is off, and I’m dropping things. Also, I have a lot of random muscle pain in various areas, much like I did at my worst.

      What has me down, is that 88%, there are so many things I can do. At 75% there are so many things that suddenly become difficult to do.

      As I write this, I’m taking my IVIg infusion. I’m hoping I get a nice boost and reverse the current trend. I took the week off, so I’m getting plenty of rest.