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Anyone have porphyria?

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Unread 01-03-2013, 12:40 AM   #11
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Join Date: Oct 2011
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Originally Posted by kwaddington View Post
Just saw this thread while searching about post concussion syndrome and porphyria, trying to see if there are any correlations in B-12 and folate deficiencies. There are 7 different pophyrias. Urine test is only relevant in certain ones, and porphyrins may not show up in urine even if you do have it.

Attacks can be sporadic--depending on porphyria type, lasting long time then disappearing for years until being triggered by other factors. The porphyrias are rare, hard to diagnose, and in my experience and location, good luck getting a doctor to deal with it properly.

I hope you have gotten to a good diagnosis. If not and your symptoms are persistant to porphyria, see if you need to investigate further.

I did not know there were 7 types of Porphyria. I did the urine test and they did cover it in foil, but it was negative. So the urine test doesn't cover it all I guess...
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Unread 04-26-2013, 01:15 AM   #12
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Some types of Porphyria, particularly HCP, need to have a stool test in addition to urine test, but even then, the results may not show positive unless the person is in attack. If you are in pain for a year, that sounds like a persistent attack, but of course I do not know for sure. In my worst attack, I had pain for several months and became thin because eating caused pain, but now I am not like that. I have a lot of neuro difficulty which is the result of attacks which were not diagnosed and were not treated. The main treatment for porphyria is to avoid the triggers, the things which cause the hemaglobin synthesis pathway to go into overdrive because of an "error in metabolism" involving enzymes in the heme pathway. Triggers are many. Look for a site which lists triggers for porphyria. You have the tendency born in, in most cases, but it may not manifest unless triggered. Triggers may be found in some medications, some foods and supplements, and in many environmental toxins. Our world is more and more full of environmental toxins, such as new rugs, carpet glue, new cabinetry which has formaldehyde and other triggering chemicals, pesticides, herbicides, and so forth. The world is a mine field to a porphyria patient. Learn the triggers and avoid as many as you can.
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