nadith83
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September 17, 2009 at 3:59 pm
Hi Amy, this is Nancy. I am constantly trying to make people realize that those who suffer CIDP do not “look sick” but, unfortunately, they actually are! If I limp or use a cane then people realize I have a “problem”; if I decide to go on my own and put my best effort in walking or whatever I need to do, well then, there goes the stupid comments such as “oh, you look healthy to me”… etc. etc.
Then there is the medical issue…sometimes doctors do not focus on what the patient is trying to communicate to him, they just think that we exagerate or worry too much about something “stupid”. My suggestion: be direct and make your point without pulling back unless they do all they can to diagnose what is causing you pain.May 12, 2007 at 7:56 pmHello Lourdes. Hello to all the friends on this forum.
My name is Nancy and I live in Italy. I have been a member of this forum but haven’t posted too many of my thoughts and pains because sometimes it’s hard to express what we are all going through. I always find comfort and support just by reading the messages and thoughts of other members because they are similar to mine. It helps so much! I was diagnosed with CIDP in february 2006. It changed my life, even though I had already gone through the battle of GBS at age 20. Like you wrote, it is hard to explain to people what we feel, how much we suffer and our physical limits because they see no “physical outer damage”… we look “normal”. At times I am afraid of crowded places because of my weakness. I have IVIG treatments every 2 months; right after the treatment I need at least 10 days to recover from mild headaches and I also very, very weak! But afterwards I feel stronger and am able to work….’til the next IVIG 😉
I have learned to take one day at a time… we have ups and downs… appreciate the “ups” and fight the “downs” :rolleyes:
Good luck to all of us 🙂May 12, 2007 at 7:26 pmHi, this is Nancy from Italy. I had GBS in 1990 and was diagnosed with CIDP in february 2006. Since then I have been on IVIG every 2 months and steroids (started at 100 mg now down to 15 mg). After IVIG I alwyas need at least a week to recover; I suffer mild headaches and am also very weak, as Grant refers. Only after a few weeks I feel the benefits of the IVIG treatment… but no longer than two months worth 🙁 So far the treatments have stopped the progression of nerve damage 🙂
August 6, 2006 at 5:21 amI have encountered the same problem! Often my voice drops down so low I can’t even hear myself! I feel as if I had been yelling. I couldn’t understand why and never thought it had to do with CIDP. Oh, what wonderful discoveries! :rolleyes:
Nancy (Italy)
August 6, 2006 at 5:11 amHello to all. I was diagnosed with GBS in 1990 and after years of suffering chronic fatigue new medical exams and visits diagnosed CIDP this february 2006. My first IVIG treatment was in april and after that a slow recovery came…just until last week, on July 29th I had a relapse episode that took me straight to another IVIG treatment. Every three months? 🙁 Honestly I thought it would’ve kept me “preppy” for longer. My neuro suggests I monitor my strength (and weakness) to program future IVIG treatments. Prednisone is now my daily meal… we’ll see what the future beholds! 😀
Thank you all for the gret info on this forum. I am sure learning a lot about CIDP!
Nancy (Italy)
August 6, 2006 at 4:52 amGreat article..thanks. I just went through IVIG last week and trying to get over another occurrence of my CIDP condition.
Nancy (Italy)
July 26, 2006 at 11:07 amHello to all,
I am new on the forum and the first message that hit me was the HEAT sufferance in CIDP patients. I live in Palermo, Italy and I can only look at the sea from my air conditioned car seat 🙁 the heat and humidity drag my feet and make me want to lie around all day.
