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Living with Polyneuropathy CIDP, GBS, & CMT

Changing doctors—can any dr. help me?

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?

I feel the same. Good Dr. but it seems as though the big picture is missed and only the CIDP is considered. I stopped after a year due to side effects which also put me in hospital. I am fortunate, we have a Center for Excellence nearby and I am going to try and get an appointment there to look into what other possible options I may have. I also was diagnosed with Primary Immunodeficiency, so that is a complication too. If is is not one thing it is another right? Hope you are feeling better from the blood clots, that must have been so scary for you. So much things happen from the IVIG that they can not say it is not related. Do you have a Center of Excellence anywhere near you?

I also have primary immunodeficiency, so the IVIG treats that too. Since I started the IVIG, I haven’t had a single sinus infection, after being plagued by them since childhood, so one good thing has come of my treatment. I’m hoping a new neurologist will have some different ideas that will help me. I’ve been stuck in one place for more than two years, and my balance is actually much worse now. Treatment options are so limited that I don’t know what else could be done other than increasing the dose. I had a very rough time last year in early fall, and my current doctor increased my dose a little. That helped a bit, but now I feel as if I’m relapsing. I’ve never felt I was getting a high enough dose. My doctor seems very conservative in his approach. When I tell him I feel as if I’m making no progress at all, he says, “Oh, don’t be so pessimistic.” He’s always trying to get me to say that I’ve improved, but I haven’t. I live in this body. I know how sick it is.

I don’t put a lot of faith in the so-called centers of excellence. I’ve seen too many messages in support groups from CIDP patients who said they received lousy treatment in those hospitals or got the brushoff from the doctors they saw. I’m in the DC area, a short drive from Johns Hopkins, where a lot of CIDP research is being done, but that doesn’t benefit me as an everyday patient.