The stmptoms I'm having that led my urologist to run the porphyria level urine test are: dark (coke like) urine, weakness, fatigue, anxiety, mood swings/depression, times where I get very shaky, chest and muscle pain, hallucinations, and constipation. Other symptoms that are listed but I am NOT having are abdominal pain, skin problems, painful skin when in the sun, seizures, vomitting, fever, paranoia, rapid pulse and high blood pressure
The only thing I know about
porphyria now is what I have read on the internet. It has been over a week and a half and I still haven't heard from the research hospital that was supposed to be getting me an appointment. I am now taking steps to try to get an appointment with the Mayo Clinic in Jacksonville, FL. Their web site actually talks about
treating porphyria and the team of doctors that deals with that. My doctor's office is closed until March 2 for vacation so I did a form on the Mayo Clinic's website to get an appointment. It says someone will contact me within 48 hours. I will update when I have my appointment and know anything. Again, I am thinging that this is medication induced and not the most popular kind which is genetic.
- 26 years old, married, Stay-at-home Mommy to 2 year old daughter
- Ulcerative Colitis since Sept. 2004
- 1st flare Sept-Nov 2004
- 2nd flare Aug. 2007-July 08
- Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month
- 10/6/08 Found a 1cm kidney stone in right kidney. Had the stone blasted and passed the fragments.