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Old 03-06-2011, 10:33 PM #7
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
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I don't know what the locations mean other than this: the most typical area for MS lesions to occur is in periventricular areas, and you have some of your lesions there. I too had atypical lesion location, but kept getting more for a while. I got an MS dx primarily because other tests were positive, i.e. the Visual Evoked Response and Visual Fields. Later the lesions changed sides and became less, years later. I also have Porphyria, and it is possible I am one of the small minority who got these type of lesions
from that. In my family, four are dx'd with MS, and it is possible that they have a type of MS which emerges from Porphyria. Very complex, none of them got a dx beyond MS other than me, and the others died on or before age fifty. You might ask about Porphyria. I often suggest this, although the testing is difficult, when people don't know what to make of their tests. I still have 50% of doctors who say it's MS, 50% who say it is Porph. Could be both? i think I have a type which is both but I think doctors and I will not figure this out in my lifetime. In any case, I now have another disease, Polycythemia Vera, which is my chief focus now, but I am always aware of the underlying
neurological problems of MS/Porphyria, and how they affect everything.
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