My neurologist has allowed me to go into a full-scale relapse of CIDP because he kept insisting for the better part of a year that my worsening problems were due to my lower back. Full-body weakness? Progressive difficulty lifting even small things with my arms and hands, inability to open a bottle cap? Burning pain alternating with numbness on the soles of both feet? Those are classic CIDP symptoms, the very symptoms I had before I was diagnosed. But he insisted my CIDP was under excellent control and ALL my problems were coming from my lower back. I am now so sick and weak that I can no longer walk in the house safely with a cane. The doctor has FINALLY realized that yes, my CIDP is regressing. I started going to this doctor because everybody, including my infusion nurse, said he was brilliant, and my pain doctor said he’s considered the best neuro in the DC area. For me he’s been a disaster. He’s switching me to Privigen — he thinks I am no longer responding to Gamunex — but I have to finish the Gamunex in my current cycle before insurance will pay for the Privigen. So I’m still waiting. I keep wondering how much additional nerve damage I’ve suffered while I’ve been getting worse all these months. I am disgusted and furious.
Yes, I love doctors too! Don’t trust some top 10 doctor advertisements, trust your own gut feelings.
Just recently, I started watching Billy Graham ministries on cable TV. It definitely helps to get a better perspective on the whole disease experience, there is only so much a doctor can do………
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