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Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Jun 24 9:52pm | Replies (31)
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Profile picture for azsbb3420 @azsbb3420

I'm newly diagnosed with acute Porphyria and am waiting for Mayo Clinic in AZ to contact me for an appointment. They are wanting to repeat the ALA 24hr urine because my results were so high at 288. I have to wait to see what testing and where to get it done. I was in extreme pain during the 1st testing as well. Has anyone had similar results ? TIA

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Replies to "I'm newly diagnosed with acute Porphyria and am waiting for Mayo Clinic in AZ to contact..."
Lori, Volunteer Mentor | @loribmt | Jun 12 10:23am

Hello @azsbb3420, While you’re waiting for other members with Porphyria to reply, I just wanted to welcome you to Mayo Connect.

From what I’m understanding, you’ve already had a ALA 24 hour urine test with high levels of Aminolevulinic Acid found in the results. Were you seen at Mayo previously or are you waiting for a callback from a referral?
Was your first ALA collection ordered through your primary care physician?

You may have already read this article but there is some helpful information about porphyria from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/porphyria/symptoms-causes/syc-20356066

What type of symptoms were you having that led up to your diagnosis of Porphyria?

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