Re: to Vic from debi

[Guest guest]

Hi Lois. Iam glad you got soma much needed information and found out that it is possible for her to have a genetic disease such as Porphyria. Now the blood test iam talking about is called Porphrnibioligin ?spl. it is a genetic test a marker you might say to see if she is carrying the gene. Now it has to be sent away for testing and takes a week or two to get the results. But the other one is called a 24hr urine for Porphyins and that is collecting her urine for 24 HR. Then they can send it away and you Will have the results in a couple of days? Did you do the window seal test? Putting a sample of her urine in a clear bottle or ruin sample container would be fine also. Please do this test yourself and let me know what color it changes to. it must be put in the sun. Iam not saying she has it but the symptoms sure point to it. It is so very rare Docs don't routinely check for it. My symptoms were Abdominal pain, nausea with lots of vomiting. THERE ALSO CAN BE SOME Neurological symp. Such as weakness, seizures and some physc. problems which are caused by the Porphyria. You are excreting to much of the porphins instead of a lack you get to much. Iam concerned because there are a number of drugs she needs to stay away from or there could be disastrous results. Would you let me know what she is raking? All and all she needs a lot of support and understanding from these darn medical people. I know Iam one of them but I also know what goes on behind close doors. Iam so sorry when you told me she had wilsm ideas at 2. That was a shocker! Is there any on going problems with that?? Well, please write back soon and let me know whats going on. Tell that Doc you want her yo have the watson-swarts test. Take care and give your daughter my love. Love Debi