Hi folks!

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