12. And Another

Wow, for laying here in a hospital bed unable to walk or move around much , the days really fly by. There are vital signs and nurses checks and medications and Specialist visits and room cleaning and physical therapy and treatments as such. It seems sometimes we barely get left alone for 15 minutes.
So, I have a lot to catch up on since my last blog. As far as the eyes, I have not gotten my vision back in my right eye. But the structure of the eye itself looks fine. The latest MRI showed a lesion on the back of my optic nerve which is what's causing the problem. The neurologist sees no permanent damage in my future. So, its just a waiting game. And like I mentioned. .. Still happy to have that one eye with vision. One of those amazing things I ponder as my eyes are pushing those clock dials around at night..... how god was smart enough to make two of , most needed organs(for lack of better words).
The rest of my MRI came back clean, meaning no new lesions. So what I'm dealing with is just remnants of "old" lesions. It means dizziness lack of coordination, headaches, numbness but other than that nothing new. Lol.
The doctors decided to extend out my IV Solumedrol, steroids. So I still have them every 24 hours. I will deal with the results of coming off that later. That's where all of you come into play... to deal with me. I still have my plasma transfer treatments every other day. Although, I had a setback this week. My fibrinogen http://en.m.wikipedia.org/wiki/Fibrinogen  level dropped below normal which can affect blood clotting so we had to wait a day for it to recover to a safe level before plasma transfer. That added three days to our stay, since they dont run that procedure here on the weekends and besides, gives my poor veins a chance to recover.
I got a great treat on Friday when my daughter was pulled from school by our pastor to come and pay me a visit. My little ones also came up today which boosted my spirits immensely. This weekend we took me off the IV fluids to see how I do on my own. It will be the final test you before going home.
We also had another difficult decision to make. The doctors decided they wanted to start me on an MS modification drug sooner rather than later. The drug that shows most potential of haulting my symptoms and its tracks is a very aggressive one on the market but very controversial as well. Its called Tysabri  http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/natalizumab/index.aspx and can only be given through in the fusion center associated with Yale or medical clinic around the area. It sounded good at first in that I would be able to maintain a normal lifestyle, yet also comes with the increased chance of a rare form of brain leukemia, which is irreversible. Also, the duration I would be able to be on the drug is 2 years. So for that kind of side effects for a two-year drug it just doesn't seem worth it. I made the decision in the middle of the night last night not to take that road. So we are looking into other options. There is a drug used over in Europe by the name of BG 12 that has been used for over 10 years for different applications but its coming to light with the help of treatments for MS.
Other good news, for anyone but my floormates here, is I got a guitar to borrow.  Life-long dream of mine.. To sing and play the guitar.  Well, I can't do either to save my life, but looking back, my kids will remember how extremely talented I was :)