Anyone have porphyria?

IceSkate · 02-07-2012, 07:53 PM

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.

IceSkate · 02-09-2012, 11:34 AM

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

mrsD · 02-09-2012, 11:38 AM

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.

IceSkate · 02-11-2012, 08:37 AM

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

muzzywuzzy · 03-06-2012, 11:53 PM

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.

kwaddington · 07-21-2012, 11:19 AM

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.

kairos77 · 07-31-2012, 06:45 PM

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

Hawkeye50 · 09-18-2012, 05:34 AM

Stomach pain is apart of the disease. I had horrible pain at night for weeks when I was younger. Now my question is this is your doctor covering your samples in foil? I dont know how many times mine were compromised because they did not cover it.

purplegirl1935 · 12-02-2012, 11:23 AM

Quote:

Originally Posted by IceSkate

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

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.

purplegirl1935 · 12-02-2012, 11:34 AM

My daughter has porphyria. She has had it a year. It takes a week and a half to get results back. Stomach pain has been going on for a year. It is scary but manageable