SE Washington doctor with CIDP experience!
AnonymousApril 15, 2010 at 11:44 am
Hello all……been away from here for a while, but thought I’d better check back in with some good news. There is a new neuro in Walla Walla who is from NM. He was associated with the University of New Mexico there and has according to him, “treated hundreds of cases of CIDP.” He has me on a new treatment regime, which I think is going to help greatly.
But the good new is that we now have someone in this part of the country who understands CIDP and knows how to help! I am pumped!
BTW, his name is Dr. John Chapin and he is located at the Walla Walla Clinic. His number is 509.525.3720 for those of you looking for someone who understands in the SE WA area.
I hope this helps some of you!
AnonymousApril 19, 2010 at 11:34 am
I am one of the lucky ones with CIDP……..my symptoms are not as severe as others – severe fatigue, tingling, burning, numbness, etc. On the bad days I am pretty much limited to the couch or bed, but on the good ones, I get 5 -6 hours of normal activity. I have had IVIG in the past, but it makes me very ill for a week or so. I ended up in the emergency room following one with flu like symptoms and a SEVERE headache, so I have tried to avoid IVIG except when I really felt like I needed it. I have tried steroids without any success or relief.
However, the CIDP is progressing slowly, so I probably needed more IVIG than I was getting. Dr. Chapin suggested trying only one day of IVIG with a very slow infusion rate, to be repeated on a 3 week cycle. He thinks there will be relief from the CIDP and maybe some healing without the side effects I was getting from the normal infusion regime.
I had the first infusion last Wednesday and am feeling much better. The tingling sensations are much reduced and the overall crushing, sickening fatigue is gone. I am still tired some, but that is taken care of by a nap in the afternoon. There has been a marked improvement since last Wednesday, so we shall see how this one day every 3 weeks works!
AnonymousApril 19, 2010 at 8:12 pm
Hello, i just thought i would share with you that my son gets 40g ivig every 3 wks. Now, my son is only 9 and is about 95lbs so i know there would be a difference; however the treatments work the same. It sounds like you have the same symptoms Brayden does. He does really well, little or no pain, he has almost no reflexes, a little clumsy, headaches once in a while. overall he seems like a typical 9 yr old little boy. I hope this new regimine works for you the way it has been for Brayden! Good luck!!!
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