So sorry you are in so much pain. Just a thought - you might try drinking green tea. It might soothe your stomach enough to be able to eat something. Also it would bring your iron levels down as Porphyria causes high iron.
I have Hemochromatosis and drink green tea to make me anemic as too much iron can cause liver damage.
When you are able to hold anything down, start with sipping aloe vera juice. That should help with the nausea and bladder spasms.
Wishing you the best...
Thank you, and I've had ct scans to see if I have MS. Which won't show up anyway till I'm older. And cts scans/ blood tests for acute intermittent porphyria. Which also can sometimes not show up till later. And I have full signs for both of those. Like, I have depression, bladder spasms, siezures, stomach pain, nausea, joint pain , sometimes constipation. There all signs for acute intermittent porphyria. Also lately my blood pressure has been high. I have so many doctors that one wants one test then I go to a different doctor and that doctor doesn't want it so they cancel it and it's so confusing. We wanted to go to johns hopskins but my endurance doesn't cover it. All I really know is that I've had a few ct scans and that always come back normal. I've had a look into my bladder. And while they were in there my appendix were about to burst. So that got out just in time as well.
Thank you for help and concern.
Hi,
I'm sorry that you are suffering so. I would like to know more. Like what type of things have been ruled out?? What x-ray's, ct scans, etc if any have been done and did they show anything??
The first thing that came to my mind was maybe a tapeworm, or some sort of parasite?? Just a thought. I will try and research and help more if you would help. I know what its like to have pain that no one can explain. Whatever happens, I sure hope you feel better soon.