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Old 05-02-2012, 09:54 PM #21
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
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When I was your age, 46, I still had no diagnosis other than anemia. I was staggering, dizzy, in pain, etc. By age 51 an MRI showed lesions on brain, and I also was positive for Optic Neuritis and other eye problems shown on tests. I was dx'd with MS, but it was years before I also was dx'd with Porphyria. Porphyria is another disease which can cause the symptoms you have, and especially I notice it can cause the symptoms which another poster say are due to Celiac disease. I was once tried on a Celiac diet but it made me much worse, in far greater pain. I am sure I do not have Celiac disease, many years later. I have three rare diseases, but not Celiac. I do have the skin lesions, but they are due mostly to Porphyria, which shows skin lesions in some types and not in others. You should have porphyria checked out, but I warn that it's very difficult to get a proper test done, partly because the disease is rare and people don't do the test right, even experienced hematologists can do it wrong--I've seen them do it wrong with my own eyes, and heard about it over and over. The best way to get a hint is to look at a safe/unsafe drug list for Porphyria, and see if you fit that. Probably it's not Porphyria, but it's worth a look. Most doctors "brag" they have never seen a case, but I've known doctors who found MORE cases than mine after I was dx'd, right in their own practices. True story about a rare disease.
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