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Porphyria: The madness of King Homeskooled

1439 Views 6 Replies 5 Participants Last post by  Martinelv
Hi everyone,
Thought I should put something up here as food for thought. It might help other people who will say " Ah-hah! I knew it! I've felt like that for years!" But it also might help others to be persistent and keep up their hope, eventhough things might be looking down in your search to beat DP and DR or something chronic and physical.

As everyone on here knows, I had DP since the age of 16. I'm now 23. I've tried every medicine out there, and I know which ones can help, which ones cant, and what they make you feel like. I understand that everyone's DP is different, but I seemed to have the severe, chronic kind with both DP, DR, and mood swings which wreaked havoc on my life. About two years ago, I began getting a brain fog which turned into severe confusion and a headache which has been perplexing the doctors. It mimics a raised pressure headache, my ventricles have been changing size, and I have the feeling of my brain shifting in my skull. I have had severe stomach aches around my upper right abdomen, and I get dizzy and my nails have turned blue. I've had everything in the book done. The only thing which turned up was hypothyroidism, but I only improved on medicine mildly. Well, about 9 months ago I went to my doctors office and said, " You know Dr. Williams, my symptoms fit the checklist of porphyria. I know its rare, but it pops up in your 20's usually. Would you check out my blood porphyrins?" "No, Steve, I honestly dont think you have that. I'll keep it in mind though". Lets fast-forward. Last week I was in the doctors office with severe stomach cramps and mind-numbing confusion/headache. He finally ran a blood test for porphyria. It came out positive. He ran a 24 hour urine last week, and all seven porphyrin types were elevated. Technically, that isnt supposed to happen. And there are no porphyria experts at my university, so I may have to travel to Boston. My parents were telling me I was crazy or lazy, and some people I knew greeted me with raised eyebrows alot, including priests. But I didnt care, because I know my own body. Honestly, if you think your symptoms fit this, a blood test is inexpensive and worth it. The diagnosis is porphyria. I dont know if my 6 year bout with DP was due to this. It could be, or it might not. But I'm optimistic and at peace with being vindicated. I swear, I'm going to use all this info in my medical practice, and write a book about it all one day. On a happy note, I told my parents last night, and they were pretty sheepish. Finally, the fact that they may be making bad decisions isnt just a subjective judgement - I have a diagnosis which shows them to trust my judgement more. By the way, the title of this post comes from the Madness of King George. He had porphyria as well, and untreated, it can get pretty bad depending on the person. Uni G, you might want to check this out for good measure. Thanks for listening guys, and I'll keep you all posted.

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Im glad to hear that youre moving forward and on the path to what could potentially be recovery. Best of luck.
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