Friday, May 6, 2011
My (1st) Trip to the Mayo Clinic.
To begin at the bottom line. It has been decided to stop giving me the Methylprednisolone (Steroids) and instead try treating me with Intravenous immunoglobulin (IVIG). IVIG is a human blood Product. Basically the two treatments are the same, trying to over ride my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Predisolone is manmade (in a lab) while Immunoglobulin is manmade (in someone’s body). IVIG does not have the side effects of Prednisolone, but cost 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 3 days in a row. Then give me a treatment once a week for 12 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 corn fields is the high temple of the church of modern medicine. I knew I was not in Kansas any more 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 wheel chair just sitting there in fact almost any place you go in town you will see empty wheel chairs on standby.
The morning of the 1st day I had my breakfast and got ready for the day. My Appt was not till 12:30 so I decided to take a walking tour of the clinic. Now the word clinic has as much to do with the Mayo as the word chapel has to do with the Sistine Chapel. The Mayo clinic owns 2 hospitals and at least 5 down town high rise buildings in Rochester not to mention campuses in Florida and Arizona. The offer tours of the clinic every day at 10 that includes a video presentation on the history of the clinic narrated by Garrison Keyler.
The tour takes and a hour and half and just gives you a feeling 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 that is at the clinic (there is a separate tour for just seeing the art but I did not take that one). They took us by one wall with names on it and told us that to get your name on that wall you had to donate 100 million dollars or more to the clinic. As we walked they would point out the different marbles used in the building and how that type came from South America while this is from Vietnam and so on.
After the tour I had lunch and then went to the eight floor and checked in for my appointment. They took the CDs I had brought and gave me a large white envelope to put the records I had brought with me in (All 8 lbs of them). They told me that I was to give the records to the doctor and that he would give them back when he was done. I was shocked by this since it meant they would not be keeping them or even have time to make a copy for their system.
When the Doctor came he took a history and reviewed my symptoms. Then he took the records I had brought and disappeared for 20 minutes to review them. When he came back he did checked some of my reflexes and pain sensation (I have had much more complete exams). He also looked at the video I had of the facial twitching (but he did not look at the other videos) we then talked.
He told me that based on my history and the results from other test I had already had it is very clear that I have an Autoimmune Encephalopathy of some kind it could be Paraneoplastic syndrome or Hashimoto’s Encephalopathy. That there were some test he could run but that none of them would change the way he treated me. Mostly they would establish baselines I asked if at some point in the future he thought we would regret not having those base lines and he said no. The tests he was thinking of was A cognitive study to show how my brain was working, A blood test to see if I had Paraneoplastic syndrome, an Elecromyogram EMG (where they would put needles in my face and give me electric shocks to see how my nerves conduct signals, I had a similar test 4 years ago and it is no fun) and an Electroencephalography.
After talking about it, it was decided to have the blood work and the EEG.
The doctor also told me that he was going to be treating me with the IVIG.
I was then given my tentative schedule for the next few days. Blood work (at once), EEG Thursday morning (this was on Tuesday) follow up with the Doctor on Friday afternoon. I asked if there was any way to do it sooner and was told yes I could go to the office where the test was to be done and be put on standby.
For the EEG I was only allowed to have 4 hours sleep the night before so I stayed up till 2 watching the food network. The next morning
I was lucky, 1st they were able to take me 1st thing for my EEG. (That is test were they hook you to electrodes and monitor your brain waves). Then I was lucky again (if you can call it luck) when during the middle of the test I had a relapse. I became very dizzy, developed a head ache, my left side went numb and felt very weak. They not only had the EEG running though all of that but they also turned on the Video so they have a visual record as well. I hope that will help.
After the test I was able to go back to bed (I was only allowed 4 hours sleep the night before). I then went to see if I could get in to see my doctor (so I can go home). He was not in this afternoon but I can try and see him 1st thing in the morning or at my appt on Friday.
I have also mailed home all 8lbs of medical record I brought with me, so that I do not have to carry them on the plane.
Thursday morning I was at the Doctor office at 7:20 and there was already a very long line of people checking in. I signed up for standby and sat down. After about 20 minutes someone came out and told me that I had an appointment for 10:45 that morning and could come back then.
I killed the time from 8:00 till 10:30 packing and walking around the clinic, hoping that I could go home that day.
I then saw the Doctor. He told me that the EEG was normal and that we were going to proceed with the IVIG. He told me that the main side effect of this treatment is a head ache if they give it to me too fast. That the Biggest danger was that there could be a virus that they do not know to check for (something new like AIDS) that could be in the product. That the goal is to get me under control with this treatment and then move me to Immunosuppressant’s. But that will depend on how the treatment goes.
I am to call the doctor and update him in 12 weeks (once the test period is done) and then I will go back to see him again in 6 to 9 months. Rochester should be a fun place to visit in winter they have tunnels to get around in since it is so cold there in the winter.
Once I was done I got myself on the 1st plane out and I am home.