Thursday, July 12, 2007
I’ve always felt that the physical problems that come with MS were just “the way it is.” Since I’ve never been very physically active (I’m the guy who reads a book rather than playing soccer with everyone else), the idea of having physical limitations hasn’t bothered me more than the feeling that I will miss playing games with my kids and building stuff with them. When I think about being intellectually weakened, however, I’m horrified. I wish I could make a deal with it – Take anything you want but I must keep the ability to think clearly.
Monday, July 9, 2007
I put in a call to my neurologist to look into Tysabri as a new treatment option for me (I'm taking Copaxone now). The promise of a stop to the progression is too much not to at least look into. My wife and I are worried about PML of course but the risk seems quite small and the payoff quite large. I feel compelled to look into it anyway.
At church it seemed everything was directed to me. Speakers spoke on the importance and power of prayer. There are three possible outcomes - yes (feels right), no (feels confused) and no answer yet. Everyone agrees that the last is the hardest but one speaker spoke about how not yet really is not yet and that if you go forward with what you think is best, God won't let you go too far before telling you that your chosen course is either right or wrong. Mens group talked about the importance of faith and how it is by doing that we receive confirmation that something is right or wrong. I feel in more than one area that I should go forward with my best guess at what is right and then see.
Today was our kids first day of summer school. My wife and I took a walk together after she came home. It will be a real treat to be able to take a walk together each day before work and after the kids are off. It think exercise is critical to doing better with MS and I'm overjoyed to have a chance to do it with my wife. Hopefully we can have some good talks and also some good exercise. I'm hopeful about the future today.
Friday, July 6, 2007
She gives a link to some good reading material.
Thursday, July 5, 2007
From My Complications:
Plasmapheresis (Plasma Exchange)
Pubmed has RSS feeds which I will subscribe to. (Broken at this particular moment but I'm hoping it will recover and that I have the right link.)
Quite a few people have discussed and switched to Tysabri with quotes such as "if 2 people hadn't died of PML, it would be the only drug on the market." and 66% effectiveness. I think the right thing to do is to talk with my neurologist about it first rather than other, non-FDA approved things.
Tuesday, July 3, 2007
Today I have been reading from some other MS centered blogs and learned some interesting things that I should look into further:
From Mandatory Rest Period there is a story about Tovaxin undergoing clinical trials. In addition another drug, MBP8298 is undergoing trials but only for people further along than I am. Also there is a link to that trial in the web site sponsored by the national institute of health where you can look up trials that are currently recruiting for patients. I'll have to first check out all the recruiting for MS related studies and then set a watch for new ones.
From Erik's Multiple Sclerosis & Lyme Blog: Alternative medicines: Evening Primrose Oil (EPO) and Fish Oil.
For my first post, I should probably give a little bit of a history of myself and my experiences with MS. I'm a scientist doing research in the areas of photonics and information assurance. I currently work for HRL Laboratories. I got my bachelor's degree in physics from BYU and my master's degree in electrical engineering from Caltech.
I was diagnosed with MS in the year 2004 (Age 30) after the left side of my face went numb for a short time. I have had problems with pain in my digits and wrists for a long time and took multiple tests for arthritis (which were all negative.) After diagnosis, I was prescribed Copaxone. I give myself an injection each morning after my shower. At first I was terrified of needles but since that time, I have grown calloused and can give myself a shot without even blinking now.
After diagnosis, I could finally explain why I felt suddenly very tired sometimes and also why, at times, my hands hurt so much. I felt empowered and spent quite a bit of time on the web learning all that I could about MS. Since that time, learning about MS has basically stagnated along with the progression of my MS. In the past two months, I have felt it's effects more than in the past and probably as a result have decided to renew my education of MS and look into some other alternatives that may help me increase my health quality.
I plan to use this blog as a mechanism to help me track my learning about MS and also progress (or lack thereof) as I try different things to reduce it's impact on my life. I have heard "rumors" that changing my diet, exercising more, and trying some alternative medicines may be in my best interest and so I'm using this blog as my journal to keep track of resources and events.
Most recently, I have heard of a drug called Naltrexone that was approved by the FDA in 1984 in 50mg doses for helping heroin and opium addicts recover. I hope to be able to convince my neurologist at Kaiser Permanente to give it a try.