The story I am about to tell is from my experience getting the first approved oral drug for Multiple Sclerosis. I will make this conversational as possible, while giving you information about my experience.
7:00 am. Kids are off to school; wife and I get ready to drive 40 miles to get the medicine. First thing I notice, forgot my cell phone. Just a block away from home, damn the torpedoes, full speed ahead. I am going to sit for 6 hours; I have a DVD player, my MP3 player, who needs a phone. Addiction rears its ugly head as I think of the calls I will miss. Oh, wait, I do not work anymore. On we go!
8:15 am. Over the 26-mile bridge, fighting traffic and we are at a stop light. A car tries to cross 3 lanes of stopped traffic. Too bad the 4th lane failed to stop. CAR WRECK. What kind of omen is this?
8:30 are we arrive at the hospital and I get in a wheelchair. I am walking poorly this morning, so a wheelchair is ok. The security guard wheels me to check-in, where my wife joins us. We do the forms and then to the first doctor. I get an EKG to check my heart rate. All okay.
9:00am Neuro time. Wife, Neuro and I meet and talk. I walk into the room of two desks, 2 comfortable business chairs and one “worship chair.” Neuro extends her arm and tells me we are in for 6 hours. I nod and look at the bottle of water on a little table by a box.
I then sat in the “worship chair.” The world slanted immediately. The “worship chair” delivered a 35% tilt to the right. I did not slip out, but close. Neuro immediately asked for a better chair, and one flew into place.
Neuro and my wife spoke briefly. Wife had to go to university and to get some work done. Now just two of us sat. The circular table had the water and a box. The rules of the day were that I would get my heartbeat evaluated about every 2 hours and that was it. I received encouragement to walkabout and stretch out. But primarily stay in the room. Oh, food? Wife and I talked on the bridge about the fact that I had no lunch. She complained that I should have reminded her to pick up a sandwich. I reminded her that hospitals have cafeterias. She shook her head as any wife does when wondering what was she thought when she agreed to marry this idiot.
Back to the room with the Neuro. Her assistant walked in and told us one of the drug companies was buying lunch. I mention this irony of complaining about big pharmaceuticals company influence and I got caught up in lunch.
The box contained a bag and some advertisements and warnings from Gilenya.
Excitement over. MP3 player time. Solitary apart from people checking in on me. I had the portable DVD, but the MP3s and radio made more sense.
9:30 Pill taken, I spoke to Neruro’s nurse. In about 15 minutes, she was going to participate in an MS phone conference.
At this point I brought up CCSVI. We discussed how bladder improvement, cogfor improvement and finger improvement post procedure had been noted and noticed. I then spoke about all of you who comment back to me about your improvements. She seemed impressed that I am not alone. I detailed the procedure and my blockages. HEY, I GAVE MY CAST TO THE PERSON WHO DOES THE INFOGATHING FOR THE PRACTICE. What good is done, who knows? But I tried to open minds.
The rest of the day was spending listening to MP3s, getting readings and waiting.
3:30 Gilenya caused my heartbeat to decrease 6 beats a minute after six hours. The expected decrease of 10 beats did not occur. I went back to get another EKG, returned to the Neuro and I was excused.
Too much sitting made me use the wheelchair as a walker. Right leg was stiff, but I got it done. I bonded with the assistant in discussing her child. While waiting for the second EKG, I shocked the Nero’s nurse with my quick, flat sense of humor. I wanted to discuss CCSVI, but I did not want to mix passion and humor.
I slept okay. I want this to work and stop any further degradations in my condition.
I felt and feel fine. I know the risks and I am willing to take them. The desire for improvement will never stop me until we stumble on a cure.
God Bless you all. Respond with any questions or comments. Keep Fighting!