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Cher0208 - April 18

Hi all,

So, 2 out of the 3 tests I took for Porphyria came out positive. My doctor was honest with me and said that in the thirty years she had been a doctor she never saw a case of Porphyria. Something in my blood test indicated that she should check my lead and iron levels before going any further with the Porphyria. We did and the only thing that came back was that my iron was on the low side of the range. Not anemic but something I should definitely supplement.

Anyway, she gave me a referral to a hematologist to do further testing and told me that if this is Porphyria then she will publish it. It's very rare. But I suggest that everyone do a little research on it and see if it sounds like you. Ask your doctor to have you tested (You will have to go to a lab for it) and don't be surprised if your doctor doesn't know anything about it.

Way before the Fibromyalgia diagnosis I had severe stomach pains that came on so suddenly and would make me black out, it hurt so bad. I thought I would die before making it to the emergency room. The gastroenterologist told me it was gas. This went on for over a year and stopped when I stopped eating meat oddly enough. Besides pain, fatigue and blurry vision, my latest symptom has been widespread numbness that scared me so much. I didn't think anything could do that to me after all I'd been through. But now that my MRI's came back normal, it is looking like Porphyria. Numbness is a major symptom.

Being persistent looks like it is finally paying off. We are getting closer to finally finding the hidden culprit that has been causing my body so much pain.

Will keep you all posted. Wishing you all a proper diagnosis!


January - April 18

Cher. Amazing! Maybe you don't have fibro after all?? Please keep us posted on how you are doing with this. Get your doctor a bouquet or something! And ask her how many people she has actually tested for porphyria?? Maybe it was your persistence that got to this diagnosis. Hope you will contact the American Porphyria Foundation - they told me there are only a handful of "experts" in this disease - and they can help you contact them. A regular hematologist may know nothing, just like your gastroenterologist knew nothing. (Hope you look him up and let him know what was really wrong. Maybe you'll get a refund. LOL!)

Thanks to your post, I learned a lot about porphyria and I suspect I've had bouts of it, especially when I learned about the drugs that cause it. But the time to get diagnosed is when you are having an attack! This week is National Porphyria Awareness Week! Hope everyone will get educated, because this disease can be very serious.

Porphyria is genetic (8 different types) and certain types cause neurological symptoms, including neuropathic pain, fatigue and confusion, as well as myalgia (muscle pain). It also causes abdominal pain and upset. And sometimes, blurry vision. Sound familiar to anyone with fibro?? SEEMS LIKE IT SHOULD BE ONE OF THE DISEASES THAT FIBRO PATIENTS GET CHECKED FOR! Also - consider the fact that acute intermittent porphyria comes and goes - just like fibro "flares."

It can be brought on by exposure to heavy metals, organic chemicals or certain drugs. It can be related to iron-deficiency. People with porphyria need to avoid alcohol, tomatoes, and large amounts of protein. A site called Porphbook (dot) tripod has info on diet.

Google "porphyria awareness" and you will get to the American Porphyria Foundation. Through them you can get to a list of drugs that cause problems for people with porphyria. Taking these drugs can bring on an "attack." (Many antibiotics and other common drugs like sedatives and anesthetics are listed.) This type of reaction is acute intermittent porphyria - so if you've ever had a weird drug reaction with vomiting or neurological symptoms, you might want to check the list of porphyrogenic drugs to see if they match up with you. A common symptom is reddish brown pigment in the urine.

Porphyria may not be so "rare" after all - it may just go UNDIAGNOSED in many people - so please, everyone, educate yourself about it. It is miserable and painful to go through - and it can be treated. Of course, most doctors know nothing about it, and you will have to advocate for yourself.

When I talked with the people at the Foundation, they were very helpful, and said (1) doctors don't know about it and (2) laboratories often don't understand how to correctly preserve samples and test them - so false negatives are common - IF you get tested!



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