Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Hi Debi, did the window sil test yesterday my only concern is we have bleak hale and very little direct sunlight light could this effect the outcome? So late today it will be 24 hours is that the right amount of time? Vicki is eating good again and is showing alot more interest in things again i,m waiting for the next bout though.Havent told ehr that it may simply be the bowel.Last night she was feeling uncomfortable, so we can her licorice as its supposed to be a natural laxative. should work sometime today.I did talk to my mum about family history its hard to get much sence out of mum at times as she is 83, but her mother vickis great grandmother had very similar symptoms.She was often laid up for days. How long did your bouts last for? I hope you have a happy holiday season and a safe one. Thankyou for your help, i value your imput. regards your southern friends lois vicki and tribe. ps if your ever in NZ please come stay!!!!!! --- debbdol@... wrote: > 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 > ___________________________________________________________ ALL-NEW Yahoo! Messenger - all new features - even more fun! http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
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