Acute Intermittent Porphyria-anyone heard of this? - Blood and Blood Vessel Message Board

tinamarie0914 · 11-24-2009, 01:12 PM

I have been suffering for quite some time from severe pain in my hips, legs, feet, back and arms. I have ruled out arthritis and have been to a neurologist for an EMG, which was fine. The neurologist ordered a lot of blood work and 24 hour urine test which came back positive for Acute Intermittent Porphyria. My research shows this is a rather rare disease and I'm trying to find others out there who have it or know about it. I appreciate any info!!

Thanks!

Gerri54 · 12-27-2009, 03:40 PM

Hi Tina, I am being tested for Porphyria and MS. Porphyria is genetic. My sister 3 years younger was diagnosed over 10 years ago now with Porphyria. I had my urine tested in 1998 for Porphyria it came back negative. Now I am showing many more signs, which had looked like Lupus. My abnormal Lupus reading was negative last test, which drs. now believe was showing positive because of my Celiac disease.

Like to know more about your diagnoses and how you are doing.

Gerri

tinamarie0914 · 12-28-2009, 09:23 AM

Hi Gerri:

Thanks for your reply. I see my regular doctor today and will talk about the results that showed positive for AIP. The test was ordered by a neurologist, but I can't see him until late January, so I'm hoping my regular doctor will be able to shed some light. I'll find a way to deal with whatever it is, I just want to know what it is. Lately I've been having horrible heartburn and my fingernails have peeled and split to the point that they are way below the tips of my fingernails. I don't know if these symptoms are related. I feel like I'm just falling apart! I'll post back what my doctor tells me today.

Tina