Reply To: How many CIDP patients does your Neurologist Have?

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.