So, since the last post which I used voice recognition for was a failure. Not only was it nearly unreadable, it scared my family when they read it. After I completed the blog entry, I went for a drive at around 4am to clear my head. I was so upset and needed to get away from where I was at so I could think.
Well to make a long story short, I was out in areas with no cell phone reception and when my wife got up, she got really worried and couldn't get a hold of me... so she called the police to look for me. I found that out when I was back in range and told her that I would be home by noon. I got home at 11am to meet the police. They wanted to know if I was suicidal. I said no and that if I was, the 3 ton truck I was driving around would have given me ample chance. Anyway, I sat down with them for a few minutes, removed the knife I wear on my belt. We talked about where I used to live (happy hollow rd) and how it is where one of the cops live now. We talked about the legends in that area and so forth. The police were completely at ease knowing that even though I had not slept for a couple days, I was lucid.
The told me that my wife wanted me to go get checked out at the hospital. So I went. They could find NOTHING wrong, but my wife was insistent on getting me into A hospital for a day or two to adjust my meds... no one would take me because there was nothing wrong! Anyway, they did find a place for me after all. So, I checked into a "loony bin". It sucked and they did not know anything about my MS meds and they were not in their "drug choice list... so they substituted what they had and kept me up until 3am that first day so they could get all the meds together that I needed. Then woke me up by drawing blood from the palm of my hand. That was 5am. Two hours of sleep... wow. So the place really SUCKED. I can go on and on about what was wrong there and how they treated people. But I don't have the energy to explain all of that experience... maybe later.
Again, readers digest version, I got out and then got into my neurologist even though I had appt the day before that I missed because I was still "locked up". It was my neurologist's day off, but he came in to see me anyway. He was either VERY dedicated or he had something important to tell me.
I had an MRI the week before and he needed to show me the results. Basically, they found a mass on my pituitary gland! He sent me to KU to get another, more detailed MRI and then to a neurosurgeon there. I am a MU guy, but they told me that KU med was the best in the area. A little hint, they SUCK as well... damn my luck. I finally got in to see the neurosurgeon and they had several people look at it and they decided that I should just come back in 6 months to follow it. But, they were setting up an "emergency" appointment with an endocrinologist... well it is a month and huge medical bill later and the "emergency" appointment wasn't such an emergency since I have not heard back from them, even after leaving messages.
We decided to get a second opinion and asked around about who is the best endocrinologist and neurosurgeon in the area. Since my wife is a medical provider (DNP,FNP) herself, she got the real information about who to go to. So WE made appointments at both.
The endocrinologist was first and he looked at my labs and noticed the mass, or whatever it is, is impeding testosterone secretion. He ordered a repeat of the labs to see if it has changed in the past few weeks. I then went to the neurosurgeon and he thought that at the bare minimum we needed a biopsy of the mass. So, all the tests have now come back and I got copies of all the medical reports (you ALWAYS keep copies of your own medical records... they are YOURS) and I saw what the endocrinologist said about the mass. He thought there was a decent possibility of it being cancerous (the real cancer, not a benign cyst or something).
So, here is the situation now. Since I take Tysabri, which is a dangerous infusion to say the least, the neurologist, endocrinologist, PCP (primary care provider) and neurosurgeon agree on the course of action: I start on high dose steroids, hoping that they will shrink the mass although steroids are a dangerous addition to the tysabri. Use testosterone creme to help raise my testosterone levels, since that will help prepare me for surgery. The surgery is the second week of August which puts me nearly 8 weeks off of the Tysabri (once a month infusion).
The conclusion to all of this is that I hope that it IS something that NEEDED to be removed or fixed and it is NOT malignant brain cancer. So everything would be okay since I took care of it so quickly. I have a small advantage that I get MRI's every year, so it was spotted fairly early. But, I am obviously worried especially when I saw it in my medical records... but, I am also pissed. First, it could be because of the tysabri since last year's MRI showed nothing and in a matter of less than a year, I got a 12mm growth and STARTED taking tysabri... We will have to see about that. Second thing I am pissed about is that KU dropped the ball and did not diagnose, but just pushed it back another 6 months instead and could not figure out how to set up an appointment for me... If they truly missed this because of incompetence, I am going to look into a lawsuit. This is way too important of stuff (my brain) to be just casting it aside. This is the one that really pisses me off. And, I hope that all ends fine for me, but is was bad enough that it deserves a lawsuit.
Not only am I really worried, drugged up, and in pain a lot, I am REALLY PISSED.