New Addenbrookes CIDP Patient
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December 30, 2007 at 6:12 am
My name is Art; I am a 64 year old male, diagnosed late Nov 07 with CIDP. On 30 Nov 07 completed one weeks intensive IVIG treatment at Addenbrookes Hospital, Cambridge, England. As of today no improvement – – symptoms have gotten worse (unable to walk unaided, no muscle control in hands or legs, can not write, difficulty self-feeding, virtually dependnt on my wife, etc., etc., etc.). Extremely frustrating, but determined 🙂 to remain positive and optimistic!! Next meet with Neurologist mid-January 2008. Looks like another course of IVIG may be called for. Would like to hear from others with CIDP – especially those in England and possibly receiving treatment at Addenbrookes. Best wishes to all for a good New Year – 🙂 things can only get better 🙂
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December 30, 2007 at 11:24 am
Hello Art,
Welcome to your new family where we feel what you feel. Don’t be discouraged if you don’t start feeling improvements right away because another very very important purpose of IVIG is to “CONTROL” the progression. That’s how it was with me. I usually felt only small improvements, what I called my “BIG little improvements”, but today CIDP is no longer progressing for me and I remain stable.Look at a recovery in months and years, not days and weeks, then in about two/three years look back.
Have you joined the GBS/CIDP forum in the UK also? What we call “crossing the big pond”. Both sides of the pond can meet.
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December 30, 2007 at 2:30 pm
Hi Art,
I am not in England, but I’ll come stay at your house if I ever get the chance to go:) I didn’t have much of a result from my first round of IVIG, but the second round was a bigger and longer improvement for me. So don’t be discouraged, Liz is correct in controlling your progession vs quick improvement. Good luck!
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December 31, 2007 at 4:38 am
Liz and Gabrielle – thanks for your words of encouragement. Can either of you (or anyone else out there) tell me how many people in the states are afflicted with CIDP? The number in England is approximately 500. Addenbrookes Hospital in Cambridge treating about 30 cases. Liz – thanks for info on UK Forum; have signed up and now waiting for user authorization. I am American living here since 1981. Happy New Year to you both and all other CIDP sufferers. 🙂 Art
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December 31, 2007 at 5:05 am
Liz and Gabrielle – thanks for your, replies and words of 🙂 encouragement. Can either of you (or anyone else out there) tell me how many CIDP sufferers there are in the states? There are approximately 500, casea on England, with 30 of these being treated at Addenbrookes Hospital in Cambridge. Liz,thanks for info on UK CIDP Forum – have registered and awaiting user authorization. Just for your info, I am a 64 year old American living in England since 1981. My forum info shows me as a Junior Member (I wish 🙂 ; but can’t figure out how to change to Senior Member 🙁 Happy New Year to each of you and all CIDP sufferers reading this. Art
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December 31, 2007 at 10:04 am
Hi Art,
I think the number of incidence is 2/100,000. I think it is much higher, and people are either misdx (as we initially were) or just have mild cases and let things be. Somewhere I read that diabetic neuropathy turns into cidp, and there are epidemic proportions of diabetic people in the world! Good luck to you on this journey, stay positive and strong!
Dawn Kevies mom -
December 31, 2007 at 9:46 pm
Hello Art,
The prevalence rate of CIDP is thought to be between 2 and 8 per 100,000. No good study of the prevalence in the US has been done that I know of. However, using this range, the number is between 6,000 and 24,000. The 500 number for England appears to assume a prevalence rate of 1 per 100,000.
Godspeed with your improvement,
MarkEns -
January 1, 2008 at 5:23 am
Thanks for answer to my query. Trying to keep myself and family stateside layman knowledgeable of CIDP. Best wishes for a good New Year to each of you.
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