So I’m not crazy!!!??
Thank you so much to everyone who has responded. I know that I’m not alone, and now I can go to my neurologist and tell him that CIDP DOES CAUSE PAIN!!! I’m going to look for a new neurologist, but in the mean time, I still have to see my old one. Like several of you said, CIDP is very rare, and most doctor’s don’t know much about it, so it’s hard to find one that can treat the CIDP in the best way. It’s also hard for me to find a doctor who will take me on as a patient because I am on medicare and medicaid. I do see a pain management doctor already because I have a lot of back and neck problems, I’ve have two back surgeries within the past two years. That doctor has me on Avinza (the pill form of morphine), and Percocet every day. Also, I am already being treated with IVIG for the Common Variable Immune Deficiency, and have been for the past five years. Well, actually as of right now I am on the Vivaglobin Subq because of insurance reasons, but my immunologist is trying to get me back on regular IVIG because both he and my neuro believe that it works better. Both doctors say that my CIDP would be a whole lot worse if I hadn’t been on the IVIG already.
My legs hurt constantly, which I’m sure all of you know what I’m talking about. But I can usually deal with the pain. But when I have the episodes of extreme pain, it feels like someone is inside of my legs squeezing and twisting everything from my hips to my toes. It may sound weird, but that’s exactly how it feels. And like I said, I also get a lot weaker. When I was in the hospital those three times with the pain, they ran a bunch of tests on me, and of course, every thing came back normal. I just want a doctor who knows about CIDP, and knows how to treat it!
Every time that I go to see a new doctor, he sits down and asks if I have any illnesses. I start going down my list, and it always knocks them off their feet! They can’t believe that I guess since I look so ‘normal’ that nothing is wrong with me. I always find it pretty funny.
I have never been to an orthopedist, except to get my AFO brace for my left leg. It was a long time ago…I don’t really remember what all was discussed. I absolutely HATE the shoe situation!!! I want to wear all of the cute, fashionable shoes, but I can’t. I’m lucky if I can find tennis shoes that I can wear. I get so disgusted every time that I go to look for shoes! I wish I could just go barefoot everywhere!!:rolleyes: