New to the group

Glucose and carb loading (breaks down to sugars) is a standard for the abdominal cramping. I'm trying to learn what my triggers are, as I have VP as well as PCT. Does your husband have problems with photosensitivity? Or, neuropathy; nerve pain?

I live in Northern California - 100 miles north of SF. The doctor situation here is nil.

thanks

deb

He does have photosensitivity and even with 70spf sunblock we have not been able to control this.

He has suffered off and on nerve pain and has actually been in the ER for severe headaches and abdominal pain. The ER doctors don't want to listen when I tell them he has been diagnosed with VP even though the Hem/Onc has forwarded this info to both hospitals in our area.

His older sister was diagnosed with "epilepsy" until about a month ago when I went on vacation to Mexico and took her for testing for VP. Out of 6 brothers/sisters in the family 4 have symptoms of VP.

In March I connected acute symptoms to my porphyria, and shared them with my doctor, his eyes getting larger than saucers. He rechecked my tests and then diagnosed VP as well. I also told him that I had felt better after eating simple candy when I started to get sick while teach a class. I had my last phlebotomy that day and instead of using saline for rehydration, they used 5% Dextrose, wonderful stuff, it actually stopped my symptoms by the next morning!

I asked him how I was supposed to convice ER doctors that I had VP. On a prescription slip he put my name, verified that I had VP and instructed them to administer the dextrose IV. I've not had to use the note, but carry it in my purse. So far I've been able to manage my symptoms at home, or on several occassions get dextrose from my doctor, who is happy to treat me during regular business hours. I also wear a medical alert bracelet, just in case I can't communicate with emergency personel.

How long has your husband been diagnosed with VP? Thank god he was finally diagnosed. Most of us have long stories regarding diagnosis and treatment. Even those who live in larger areas have difficulty find doctors who are adept at treating this disease. I seems that it's on us to learn, then learn about ourselves and to learn from others.

Deb

My little brother-in-law (18 year old) had shown neurological symptoms and abdominal pain, headaches, a few seizures over the last 2 years, bu just started showing cutaneous photosensitivity.

Thanks to the dermatologist here, we've been able to have the other siblings diagnosed although they have no physicians prepared to deal with attacks and I have shared all the information I have but wish I had more.

The hardest thing in the world is seeing someone you love in such severe pain and being unable to do anything to stop it.

I've found that anything that stimulates the liver isn't good, including some foods. Also, California had a lot of (1,700) forest fires this summer, so escaping the smoke was impossible. I felt terrible when our area was socked in with smoke, so I know that my liver was having difficulty metabolizing the toxins. Wheat and barley grass may be healthy for some, but makes me instantly ill. Another trigger is sulphites used to preserve some shell fish, nasty stuff in any form. Chemicals like paints, phenol (found in cleaning agents), chlorine or other strong chemicals can trigger the P450 pathway. I've taken to journaling and making every effort to connect the dots.

I'm just now feeling somewhat better and am going to try to return to work full time. I went searching on Friday, a real milestone after spending the better portion of a year hiding from light.

In 2005 I had a series of migraines, that were never explained, so now I'm certain that they were connected to the porphyria. I obtained my medical records from my primary who I've been with for 23 years and found that i had complained of blisters, pain, fatigue and intestinal symptoms for year. Now my history makes more sense after being put into context.

Deb

Thanks for the NAPOS tip. I'll check it out.

Carol

My husband has PCT. I have a post under Need an Arizona Doctor.