I have a neuro appt at the end of the month; I don't do doctors as a rule, but I'm motivated by CCSVI and exploring a technologically advanced foot-drop system to see if anything (I doubt it) is possible. I don't like neuros because they are negativity carriers whose usefulness is far outweighed to me by that trait, so I'm trying to prepare myself a bit.
One way is just rereading the EDSS and trying to fit myself into it, which doesn't work well because of hemiplegia not being what it seems to take into account. I was a bit startled to see a graph showing average time at each numbered state (1 being great and 10 being "death due to MS"), which claims the average time spent at level 9.5 ("Totally helpless bed patient; unable to communicate effectively or eat/swallow") is three years. Three years?
Most people with MS are acutely aware that waiting isn't possible (see above) and that even being a guinea pig or trying something that works partially or only for a few people is preferable to doing nothing. Of course, each person has his or her views on things as well as the individual disease course that makes MS difficult to deal with, and not every person has just one disease to deal with, which also changes options and results.
I'm keeping an open mind about CCSVI, and am exploring the avenues closest before considering those further away. This is the only thing so far that has made any sense at all to me, so I'd be giddy if I could do it, but I'm teetering on the brink of a precipice here.
posted by - 9:49 AM