In the short time that Terry has been officially diagnosed with MS (since 2001), it seems like research has come a long way. I admit, we have not been as diligent as we used to be or should be about keeping up with the latest research and findings about this curious "snowflake" disease. But we have recently connected via the internet with someone who also has MS and who also uses the VA for their care, as we do. This has inspired us to resume our quest for knowledge as we fumble through a life with MS. Not only are we learning more about this disease already, but we are also learning more about what the VA has to offer for MS patients.
Last night Terry was up late because he couldn't sleep, so he decided to do some online research about MS. One of our favorite places to go online is the National Multiple Sclerosis Society's web page, www.nmss.org. It is a non-profit organization that has everything from information about support groups, to a list of neurologists that you can choose from, to a library lending service. There are also chapters located in each state that you can join and participate in. We joined our state chapter back in Utah several years ago and met so many great people through the activities the chapter provided. We have tried to join here, but it is further away from us and has been more difficult to get involved in.
The reason I mention the NMSS is because that is where Terry went last night and what he found scares me but also intrigues me. We have always been very curious as to whether or not MS was hereditary or had any genetic links. At the time that Terry was diagnosed, we were told by many people that they did not know, but that they thought it was unlikely. After all, no one in Terry's family has MS, nor can anyone remember his ancestors having MS. Through the NMSS we also met people who had multiple family members with MS, but then others who had never heard of the disease until their own diagnosis. Many speculate that being in the desert while in the military has something to do with it, and there is even a website and foundation about it. Personally I don't know what to believe. But I do know a little about Biology now that I am studying to be a nurse and I also know that what I have read leads me to believe that MS is hereditary.
For me, this is the worst news possible. I have seen my husband suffer all these years, and I am sure there is more to come. I can not even begin to imagine my sweet little girls going through the same thing. Though at the moment the chances seem slim that any of our children will get it, the idea is still there and it has always haunted me, somewhere in the back of my mind.
I am going to need some time to sort this all out in my head and to do more research on the theory. As I find more information, I will post it. In the meantime, go to http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=996
and check out the article written March 5, 2009, entitled "Genetics Studies Yield New Clues to Why People Get MS."