Originally Posted by twitchyfirefly

Monday? That's incredibly fast! Good for you!

This was my experience in October 2010: my initial visit to the Mayo Clinic (Minnesota) lasted five days. There is no test for MMN, so they spend a lot of time ruling out everything else, including things like heavy metals, Lyme disease, etc. (after three years of subsequent research, I wish they had included gluten sensitivity in their testing; I don't believe they did. Celiac disease can mimic MMN. Lots more information in the forum.) Prepare yourself for a lengthy EMG. Since you have other issues, there might be even more testing.

One thing I really like about the Mayo Clinic is that when you're talking to a doctor, they're not looking at their watch every five minutes. My first office exam, with two neurologists, lasted a long time. Since my initial visit I have been seeing Dr. Jones, who is very sympathetic, friendly, focused on me when I'm there, open to my suggestions, and willing to answer any questions.

Once they are fairly sure of the diagnosis, they work out a treatment plan for you to follow back home at your local facility. I get my infusions at the chemo center at the local hospital. I don't have a local neurologist — we don't have any here – so I run everything through my GP.

I was very lucky to have good insurance (being self-employed I have to buy my own, here in the U.S.) and, knock on wood, they have never squawked about any of the expense. Immunoglobulin is incredibly pricy. My initial visit to the Mayo Clinic, with all the testing, was about $17,000; my subsequent semiannual visits to Dr. Jones run about $350 (for an office visit only, no testing). I live 1000 miles away from Rochester, but luckily I have family close by, so I always drive and work in a family visit with my checkups.

My favorite place to stay in Rochester is the downtown Days Inn. It's kind of funky and old with lots of character. The other advantages are that it's relatively inexpensive and only one block away from the main clinic building where Neurology is based. My first visit I stayed at the Motel 6 which is a few miles away; all the local hotels have a free shuttle bus to the clinic, but the Days Inn is almost as cheap as Motel 6 and within walking distance, and a lot nicer character, so that's where I have stayed ever since. Also there is free parking at Days Inn. You have to pay to park in Rochester otherwise.

Any other questions, just ask!