Tuesday, April 6, 2010

Back from the Cottage

It was a wonderful Easter long weekend: a wonderful place on the Baie de Chaleur, unbelievably mild weather, good food, good friends... and hope.  While I was there a local MSer who had contacted me previously by e-mail came over to visit with his wife and youngest daughter.  He has had MS for almost 25 years, most of it RRMS.  Although not officially re-diagnosed, he is fairly certain that he is now well into SPMS.  He says that five people in his family (including cousins) have MS.  (That's a second group of five cousins who have MS that I have heard of in that small area of New Brunswick).

He told me his neuros (in Montreal) are both speaking out forcefully against the CCSVI theory.  He asked for my advice. I told that him it's his life and he has to make his own decisions about what is best for him: it's the rest of HIS life that will be affected, not those of the doctors.  I said that going to Poland makes a lot of sense for me in my situation.  I've studied it a lot and though there are still many unknowns, the preponderance of evidence points to a treatment that can improve some symptoms or at least maintain my quality of life for a lot longer.  I told him that it makes very good sense for him to get on a list as soon as possible, and do some research online so that he can come to his own conclusions about the risks, potential benefits, and the probability of each.  He can always decide not to go in the end, but at least he'll have that option.

I didn't see this posting before I talked to him, but it talks about someone 5 months after "liberation" who has dramatically improved her quality of life: http://www.thisisms.com/ftopict-11021.html

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