Porphyria

-Anyone on here have porphyria? My doctor is testing me for it after having a year of stomach pain, about 6 months of blurred vision, autonomic problems (lightheadedness, POTS), and 2 and a half months of ageusia (inability to taste) and whole body numbness.

It doesn't really seem like porphyria to me because in porphyria doesn't the stomach pain come and go rather than lasting a year?

-If not porphyria, then I have to get an MRI... hope it's nothing worse.

Right now I feel 100% better, which is really weird.

Does anyone know how long it takes to receive the results back on a 24 hour urine test for porphyria?

It's only been 3 days but I'm so nervous thinking about it. I wish I had the results.

Also, do you only get attacks with this for 1 to 2 weeks? I had abdominal pain for a year... is that typical of porphyria?

Thanks

I only know of one person here who has porphyria. And she doesn't post often.

She is on the MS forum when she does visit.

I'll send her a PM and see if she can answer you.

Porphyria urine was negative... next is an MRI to see about MS

My daughter has had it for about a year. It usually takes about a week and a half for test results. Her pain has been almost constant for a year. In acute attacks it is constant pain.

hiya.. yes i have porphyria.. i also suffer with constant nerve pain in my legs and arms.. and if i do eat to much protein, i do suffer the next day with the stomache cramps.. at the moment my doctor is taken a pint of blood from me every fortnight, as my iron levels are very high.. my porphyrin levels are 967 when they should be 30.. my iron levels are 380. they should be 50.. i forgot to say, i also pee a dark red, but since the blood letting that has eased up.

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 also have porphyria. I'm 35, just diagnosed 6 weeks ago after a lifetime of going nuts due to the pain and complete lack of support

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...

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.