Hi folks!

    • Anonymous
      July 16, 2007 at 4:47 pm

      Hi – my name is Paul:

      I just found out about this site, I did not know they have such a site. I was diagnosed with CIDP in October 2005. It all started at the end of May, 2005 with a bit of needles and pins on my right large toe area and progressed up both legs and up my hands over the next 3 months. The initial diagroses was periferal neuropathy. Then it affected my chest and stomach, my chest felt like having a bucking strap around it, and I could hardly breathe. Then my face started to tingle, as well as my throat. At the end of September, I could no longer walk, lost my balance abilities completely, could not get up the stairs to the main level of the house and ended up in a wheel chair. In October I was loosing weight at a rate of 2 pounds per day. After months of tests involving ultrasounds, catscans, MRIs, blood tests galore, Xrays, and a spinal tap, my neurologist said that the only conclusion he could come up with is CIDP and it was the worst case he has ever heard of. My weight went from 235 lbs to 150 lbs, and I started IVIG at the end of October, 2 consecutive days at a rate of 1 mg per 1 kg, twice a week. I kept loosing more mobility for the next 4 months, and the nerve pain was terrible, and was put on pain meds. Cold packs on my hands also helped quite a bit. Things did not look very good, but my neurologist wanted to keep the course with the IVIG treatments and things finally leveled out in February, 2006. I started physio, but could do very little. I slowly got more strength, a little at a time. By September, 2006, I finally was able to get into and out of the wheel chair and onto the couch or bed by myself, but it was a chore. By November, I did not need the transfer board any more to get from the wheel chair into the car and back. Physio was now picking up, twice a week and also swimming once or twice a week. In addition, I also did physio at home every day for at least 1 hour, stretching and working on my legs and arms. The high protein diet put a bit of weight on me again and my hands and arms were improving, so was my chest and stomach, as well as my face. By December 15th, I was able to walk a few steps by myself, aided with a safety belt, tightly held by my physio student, and the next day, I was able to get up the stairs again, but with difficulty, to live a more-normal life. Our goal was that I would be able to spend Christmas upstairs again. I do physio twice a week at the local hospital, swim at least once a week, and do physio at home at least once a day. I saw my neurologist in January and went into his office in a wheel chair, in Arpil, I just used a walker and my last visit, last week, I walked into his office by myself. My IVIG is now 8 weeks apart, good thing, I was running out of veins to poke. A lot of hard work and excellent support from my wife and the physio team at the local hospital brought me back to being able to walk again, not a pretty sight, mind you, my ankles and feet still need a lot of healing, I use a soft ankle support called “Aircast” and my balance is not totally there yet, but everything else has turned around to near-normal. My neurologist says that there is no reason to believe that my ankles and feet will not heal up within the next year, since everything else has recovered back to about 75%, and some 100%. Anyway, that’s my story!

      Paul – a new member

    • Anonymous
      July 16, 2007 at 5:25 pm

      that’s a happy ending story, considering that some of other people here are still battling with insurance comp or trying to find the right treatment for themselves. Well, you still have some more work and recovery to do but I am so happy for you and your family. Keep up the good work and stay around this site , some of us may want to know more details about your experience, would be nice to have a ”fresher” opinion about this nasty syndrome. whishing you all the best.

    • Anonymous
      July 16, 2007 at 10:51 pm

      Glad you found this site Paul, it can be a great comfort during times of need, as well as a wonderful source of information.

    • July 17, 2007 at 7:42 am

      Always nice to hear from someone with good news. You sound like a strong person with a good support system. Welcome to the site!

    • Anonymous
      July 17, 2007 at 8:14 am

      Nice story Paul! It is nice to hear you have improved. It does take time ,everbody recovers differently. Glad your on your feet again keep in touch!!!
      Mudbear:) 🙂

    • Anonymous
      July 17, 2007 at 4:37 pm

      Nice to meet you Paul, welcome to the family. I am glad to hear that your doing better.


    • Anonymous
      January 12, 2008 at 2:52 pm

      Just a short update – recovery still going well, although slower now. They say that the last bit takes the longest. I’m now totally on my feet and don’t need the canes any more, although I would like to use them, but my wife said I don’t so she hid them. I do use the soft anke braces still to walk any distance. We went to Mexico on holidays and I did a lot of walking, the feet got a bit sore but I survived and the walking improved. I even went snorkling a few times, had no problem with it at all. The lower legs and feet still have a way to go but the muscles that bring up the toes are starting to work a bit again. I just have to be patient and be glad with the improvement to date, many never get this far.



    • Anonymous
      October 21, 2008 at 11:38 am

      Everything is still going fine, having IVIG now 3 months apart. I can now walk up to 2 miles, we have been going out walking on hiking trails all summer. I still do not have complete control over my ankles and feet, they still tingle but everything else is near normal. In my case, the solution that got me to this point is to do intensive physio starting from the time I could not even stand on my legs. My neurologist sais that my case has been the worst he has seen and has had the best recovery.

      I am writing this update so that all of you must not give up, if you work extremely hard and keep a positive outlook, things can and will improve, I am a living example of that. It has taken me over 3 years and I am still improving.



    • October 21, 2008 at 12:02 pm

      Great to hear of your wonderful progress. I hope my son too will be at the every three months and eventually ivig/relapse free. Keep up the awesome progress. Best wishes.
      Dawn Kevies mom

    • Anonymous
      October 21, 2008 at 5:22 pm

      PKUTZER, is that the only treatment you receive? Just the IVIG? Are you doing anything else??


    • Anonymous
      October 21, 2008 at 10:23 pm

      Paul, great to hear your news! I am so happy you are doing so well. I am from SK so it is nice to have a Canadian Western posting here! Take care and stop by again!