My (1st) Trip to the Mayo Clinic.

To begin at the bottom line: it has been decided to stop giving me Methylprednisolone (steroids) and instead try treating me with Intravenous Immunoglobulin (IVIG). IVIG is a human blood product. Basically, the two treatments are similar— both try to override my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Prednisolone is man-made (in a lab) while Immunoglobulin is man-made (in someone’s body). IVIG does not have the side effects of Prednisolone, but costs a lot more and takes more time to infuse. The plan is, as soon as my insurance company approves the treatment, to give me the treatment for three days in a row, then once a week for twelve weeks, and see how I am doing at that time.

How was the trip? It was a trip. I feel like I have been to the Vatican—there in the middle of the cornfields is the high temple of the Church of Modern Medicine. I knew I was not in Kansas anymore when I got to my hotel. Normally, when you walk into a hotel you find one of those carts for luggage; here, in place of the cart, they had a wheelchair just sitting there. In fact, almost anywhere you go in town you will see empty wheelchairs on standby.

The morning of the first day I had breakfast and got ready for the day. My appointment was not until 12:30, so I decided to take a walking tour of the clinic. Now, the word “clinic” has about as much to do with the Mayo as the word “chapel” has to do with the Sistine Chapel. The Mayo Clinic owns two hospitals and at least five downtown high-rise buildings in Rochester—not to mention campuses in Florida and Arizona. They offer tours every day at ten, including a video presentation on the history of the clinic narrated by Garrison Keillor.

The tour takes an hour and a half and gives you a feel for where the different buildings are (not what’s in them). They also make a point of showing some of the millions of dollars in art at the clinic (there is a separate art tour, but I didn’t take that one). They showed us a wall with names on it and said that to get your name there you had to donate $100 million or more. As we walked, they pointed out the different marbles used in the buildings—this one from South America, that one from Vietnam, and so on.

After the tour I had lunch and then went to the eighth floor to check in for my appointment. They took the CDs I had brought and gave me a large white envelope for my records (all eight pounds of them). They told me to give the records to the doctor, and he would return them when done. I was surprised, since that meant they wouldn’t be keeping them or even copying them for their system.

When the doctor came, he took a history and reviewed my symptoms, then took the records and disappeared for twenty minutes to review them. When he returned, he checked some reflexes and pain sensation (I’ve had much more complete exams). He also looked at the video I had of the facial twitching (but not the others), and then we talked.

He told me that based on my history and test results, it is very clear that I have an autoimmune encephalopathy of some kind—it could be Paraneoplastic Syndrome or Hashimoto’s Encephalopathy. There were tests he could run, but none would change the way he treated me. Mostly they would establish baselines. I asked if we might regret not having those baselines later; he said no. The tests he mentioned were a cognitive study, a blood test for Paraneoplastic Syndrome, an EMG (where they put needles in your face and shock the nerves), and an EEG.

After talking it over, we decided to do the blood work and EEG. The doctor also told me he would treat me with IVIG.

I was given a tentative schedule for the next few days: blood work immediately, EEG Thursday morning (this was Tuesday), and a follow-up Friday afternoon. I asked if I could do it sooner and was told I could sign up for standby.

For the EEG I was only allowed four hours of sleep the night before, so I stayed up until two watching the Food Network. The next morning, I was lucky—they were able to take me first thing for the EEG. In the middle of the test I had a relapse: dizziness, headache, left-side numbness, and weakness. They had the EEG running through all of it, and they turned on video as well. I hope that will help.

After the test I went back to bed (only four hours’ sleep, after all). Then I tried to see the doctor to ask if I could go home, but he was out. I could try again in the morning or at my Friday appointment.

I also mailed home all eight pounds of medical records I had brought, so I wouldn’t have to carry them on the plane.

Thursday morning I was at the doctor’s office at 7:20, and there was already a long line of people checking in. I signed up for standby and sat down. After about twenty minutes, someone told me I had an appointment for 10:45 that morning and could come back then.

I killed time packing and walking around the clinic, hoping I could go home that day. When I saw the doctor, he told me the EEG was normal and that we would proceed with IVIG. The main side effect is headache if given too fast. The biggest danger is an unknown virus (something new, like AIDS once was) possibly being present in the product. The goal is to get me under control with this treatment, then move to immunosuppressants, depending on how things go.

I am to call the doctor and update him in twelve weeks (once the test period is done) and then return in six to nine months. Rochester should be interesting in winter—they have tunnels for getting around because it’s so cold there.

Once I was done, I caught the first plane out—and I’m home.

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