Re: help needed here .My vicki

[Guest guest]

Wow Debi, that is something to have such a rare blood disease. Do you know who has it in your family or did it skip some generations? How did you go into remission....is it due to meds and diet you were on and do you have to still keep to the diet to stay in remission? This is one of the positive parts of having this group as never know who may have a answer to something like this and even if this is not her problem, will be something most will recall should someone we know ever show these symptoms. Take care Debi and thank you for telling about this.

Hugs

JoAnn

s Momma

Re: help needed here .My vicki

hi my name is debi (DEBIRSD4i HER SYMPTOMS SOUND LIKE SOMETHING I WAS BORN WITH BUT DIDNT MANIFEST ITSELF UNTILL I WAS IN MY 20S, ITS CALLED ACUTE INTERMITTANT PORPHYRIA. A VERY EXTREEEEEEMELY RARE BLOOD DISEASE. IT IS GENETIC AND YOU HAVE HORRIBLE ABDONINAL PAINS WITH NAUSEA AND VOMITING AND YES PANIC ATTACKS. THEY HAD ME HAVING EVERYTHING FROM GALLBLADDER ATTACKS TO PHYSIOLOGICAL PROBLEMS. I SAW ALL THE DOCTORS AND EVEN MAYO CLINIC. PHYSIC DOCTORS TO GOD KNOWS WHAT ELSE, BUT IT TO CAN CAUSE PHYSIC PROBLEM S. ALONG WITH AN ACUTE ATTACK. HAS ANYONE ELSE EXHIBITED THESE SYMPTOMS YOU ANY AUNTS COUSINS EXT. I WOULD LIKE TO KNOW HOW OLD VICKI IS? ALSO THIS IS GOING TO SOUND CRAZY BUT FOR A TEST U CAN DO ON YOUR OWN IS HAVE VIC URINATE IN A CLEAR STERILIZE BOTTLE AND PROCEED TO SET IT ON A WINDOW SEAL WITH THE SUN DIRECTLY ON IT FOR 24 TO 48 HRS. IF IT TURNS A REDDISH PORT WINE COLOR IT COULD MEAN ITS POSITIVE FOR PORPHYINS ALSO ASK YOUR DOCTOR TO DO A 24HR TEST FOR PORPHINES. AND A BLOOD TEST FOR (GET READY) OH HECK CANT SPELL IT BUT ITS A SPECIAL BLOOD TEST TO DETECT THE DEFECTBUT HE WILL KNOW WHAT THE TEST IS. FOR GENETIC DEFECT. ANYWAY DOCS DON'T EVER CHECK FOR THIS AS ITS SOOOOOO RARE! I KNOW THIS SOUNDS CRAZY BUT ITS ALL TRUE. THERE IS TREATMENT FOR IT. SUCH IS HIGH CARBOHYDRATE DIET, a lot OF SUGAR CANDY EXT. ALL THIS DOES IS ABSORB THE EXTRA ENZYMES SHE IS SPILLING OUT. AND FOR PAIN NARCOTICS SUCH AS DEMEROL WORKS WELL. THERE A TONS OF MEDS SHE MUST STAY AWAY FROM. BUT FIRST SEE ABOUT THIS WITH YOUR DOCTOR. ITS PRONOUNCED (POR-FEAR-IA) IV BEEN ON REMISSION FOR YEARS SO I DONT HAVE TO DEAL WITH THAT ANYMORE BUT THE RSD I DO. PLEASE LOOK IT UP ON WEB SITES THERE ARE 7 DIFFERENT KINDS. I BELIEVE THERE IS A SUPPORT GROUP TO. IAM A NURSE AND WOULD BE VERY INTERESTED IN WHAT THE OUTCOME IS. ALSO A GOOD DRUG FOR NAUSEA IS SOFRAN IT WORKS FAST IF GIVEN I.V. PLMK I HOPE I HAVNT STUCK MY NOSE IN TO MUCH. GOOD LUCK DEBI (DEBIRSD4)