It has been just over one year since I was diagnosed with MS, and a lot has happened in that year. From Physical Therapy to immuno-modulators, dietary changes to vitamins and supplements it has been an interesting ride.
I call it a ride because that is literally what it feels like. The MS has affected the right side of my body, leaving me with numbness and tingling, an unsteady gait at best, heat sensitivity and more.
I am thrilled though at being diagnosed, not an uncommon feeling for those afflicted the multiple sclerosis. Like so many who have told a similar tale, the road to diagnosis was a rocky one to say the least. I am not a doctor, nor a scientist, but my own personal experience leaves me one conclusion: MS is severely under-diagnosed.
Perhaps this wouldn't be the case if there was a national registry in place to begin tracking cases of multiple sclerosis. I understand there have been efforts in congress to get such registry in place. The last mention I can find of this is H.R. 1362 from 2009, the National MS and Parkinson's Disease Registry Act. The bill was referred to the House Committee on Energy and Commerce, where it will presumably languish, if not for any other reason than I expect this committee to have it's hands full of oil.
This will be one of the issues I focus my attention and efforts on going forward. Official estimates are always quoted at around 400,000 afflicted in the U.S. but I have also seen some unsubstantiated ramblings of up to two million. We of course won't know until such time a National Registry is establi shed. My personal experience is you can't throw a rock without hitting someone with MS, at least locally. Of course I live in a midwest town that was formerly heavy industrial (GM), so I also have to wonder about possible causes. There has, to date, been no cause of MS identified. There have, however, been a few "clusters" identified worldwide. I understand that there is an effort underway to at least get a count of MS patients locally, and I support this completely.
On edit: The National MS Society's position paper on the establishment of a Registry can be found at http://www.nationalmssociety.org/search-results/index.aspx?pageindex=0&pagesize=20&keywords=National+Registry&x=0&y=0
