How many CIDP patients does your Neurologist Have?

    • July 6, 2017 at 12:08 am

      I am curious about the CIDP patient volume of the neurologists treating people. With most specialists, I look for experience with disease, procedure, etc which in theory should provide better results. I realize that isnt always going to be true but it gives one some idea.

      With something rare like CIDP I expected numbers to maybe be on the low side, but was actually a bit surprised even at university settings with decent medical schools.

      So Im wondering whats a decent number…10? 20? 60? 100? I know I’d like a lot, but also realize that may not be realistic at least without travelling to a more specialized center.


    • July 7, 2017 at 10:13 am

      I don’t think my neurologist has ever seen a case before me. He has his laptop with him during the visits, looking up things all of the time, which is good. He is very young, in. Practice with several other doctors. The senior partner did my NCV and EMG studies, and another partner saw me when I was hospitalized for IVig.

      My neuro has referred me to the UC Irvine Neuromuscular Center, and the visit is still over a month away, and I have been waiting for five months!

    • B
      July 14, 2017 at 10:51 pm

      I’ve seen two neurologists. One said he sees more CIDP than anyone with Denver, with 40 patients. For my other neurologist, the infusion nurse estimates that practice has about 40 CIDP patients. If you assume they see patients 3 times a year, that’s 120 appointments or 2-3 a week? So not a huge part of their practices, but not unheard of. I’m sure other docs/cities/practices have different stats.

    • August 11, 2017 at 10:44 pm

      Great question …..
      For me , I saw 4 Doctors that treated me like It was all in my head , lab work, MRI’s and scans were normal. Each day my health declined and I was scared. I didn’t know what was happening. I was a healthy, active Adult and Doctors could’nt diagnosis me. One Doctor told me
      First available appointment to see a Neuroligist would be over a year. I said at this rate of deteriation I would be dead . Reply was ” I am doing my best ” . Do not commit unless the Doctor has treated CIDP. With that said, Not all experienced CIDP Doctors will be a good match for you. Each Neurologist has different beliefs on treating this rare , nasty disease of CIDP.
      Many Neuroligist have read about CIDP but have never treated CIDP. I have seen two Neuroligist Who use ” case study ” as a treatment plan . Did not treat MY SYMPTOMS, they treated what they read of other patients. Within one year I saw using a wheelchair and sick from all medications .
      It is frustrating answering your Doctors questions , what is your pain level and where do you hurt? They do not understand chronic pain is different from I stubbed my toe kind of pain. CIDP HAS EVER CHANGING MUSCLE AND NERVE PAIN. I did find amazing Neurologist who listened and was willing to try different treatment plans if she saw no results. IVIG worked best for me. I strongly suggest finding a Doctor who treats YOUR symptoms not what worked for others.