Very lucky, too
I had symptoms in the winter of 2004. At first, the doctors thought they were caused by a bulging or herniated disk. After treatment for that did not work, I was sent for an MRI which showed no disk problems. After that, I got a referral to a local neurologist who did an EMG and saw abnormalities. The problems was that this is a small community, and he may never have seen a CIDP case before.
Time was passing, my symptoms were worsening and the local neurologist and his partner did not know what to do. Ironically, I was told I could go to the ER if things got worse. This just convinced me that I had to go to a larger city to find more experienced doctors.
Both an Internet search and a “word of mouth” referral from a doctor friend in New York City led me to the same place — the Peripheral Neuropathy Center at Weill-Cornell. Dr. Chin saw me a month after receiving my “cold call.” His neuro exam led him to strongly suspect CIDP, but he wanted to confirm it with an EMG/NCS test. He extended my appointment to the next day, did the test, made the diagnosis and wrote the orders for IVIg. Within less than a week, I was getting treatments here in Burlington, VT. For 6.5 years since, the same visiting nurse has come to my office to administer the IVIg. She will be here today.
Although I am in a relapse or flare right now, I still consider myself very lucky. Diagnosis and treatment were early enough that I did not have significant axonal damage. When I am not in a flare, I can do virtually everything that I could before the original onset of symptoms.