Porphyria

[Beth E.]

Hello. I have all the signs of porphyria. I have absolutely no doubt that I have this disease. The problem is I have to wait till I'm having an attack before I can be tested. I have suffered so much for so long that that just kills me... to finally know after 26 years what is wrong and not be able to do anything about it, but wait for another attack... and even then, what if they don't do the test right at the hosptital. It's not a common test, no one seems to know much about it except for the experts. So should I force an attack? Drink, smoke, and the other main triggers? I just want to be well for the first time in my adult life.

[Rhonda58]

Hi Beth,

Don't know if you'll see this since its several months since your question was posted.
I have acute intermittent porphyria. I was diagnosed when I was 21.

You need to go to an internist. Once you are there, ask the doc to test you for it. You shouldn't have a problem getting that done, especially if you're having endless symptoms.

You do not want to have this disease. I am 49, and a complete hysterectomy helped me tremendously with the frequency of episodes.. now I'm having neurological problems which may be related. On top of that I am a chronic pain patient of 7 yrs now. I've been on almost everything, but because of the porphyria, I cannot have steroids, NSAIDS, and a long list of other meds...

Good luck,
R

[Beth E.]

Thank you!

[Derek9353]

my thoughts are with you.I have recently tried tramadol (without gp's help) and have slept properly for the first time in a long long time.I am sure it won't last long , however , any relief is better than the nightmare I am living in.I have been pain free for nearly a week now and long may it last.They are large amounts ie 200mg 4 times a day.Have you tried them Beth ? I think you call tramadol ULTRAM in the U.S.Just a thought...fingers crssed for you.

[Beth E.]

I don't believe this bumping thing works :)

[Beth E.]

bump

[Beth E.]

Please Dr. have mercy and help me with this question :)