I’ve had the same neuro since I was diagnosed with CIDP in January 2017. I have become very unhappy with him for several reasons — the worst problem being that he ignored clear indications of blood clots in my leg for A YEAR and prescribed a diuretic for what he said was swelling common to CIDP. When my PCP finally had an ultrasound done, THREE blood clots were found in my leg. Blood clots can kill. Even then he wouldn’t admit that IVIG could possibly be the cause. I have not trusted him since then. Add to that the fact that I am really no better now that I was the day I started IVIG in March 2017. I have less nerve pain, but in some ways, such as balance, I’m worse. My neuro is highly respected, teaches neurology in medical school, but he’s getting old and is forgetful. I have made an appointment in early October with a younger, also high respected neuro. But I have begun to wonder if I can find any doctor to help me. This disease seems to have no guidelines for success treatment.
How many of you have had multiple neurologists? Have you found anyone who really knows how to help? Are we all flying blind?