PORPHYRIA

[BADBULL47]

DOES ANY ONE ON HERE HAVE PORPHYRIA? IF YOU DO PLEASE
LET ME KNOW. WE CAN COMPAIR NOTES.

[TheLightSeeker]

I'm replying  here because of a mutual "friend".
It really does not make any difference.

The answers you are looking for from conventional medicine
will not help much. I can offer you thoughts and suggestions on this level for some perhaps marginal temporary relief, but my ultimate suggestion is to Seek ansewers from higher realms of energy.
You MUST HEAL first, before you can become better.
Your psyche and spirit are the overarching governing powers of our well-being,  TOTALLY ignored by modern medicine.
Serious spiritual and emotional imbalances are the underlying true causes
of most- if not all- serious diseases, rare or not!
Look back and examine your lives. Some may not be able to see significant  past events in their lives, as some survival mechanisms, may
block them from memory when these events become too traumatic to process safely.
You are not crazy, it is not in your head and there are things you CAN do!
Post any comments,  questions, you wish. Non-judgmental comments
are preferred. You may also pm me directly.
Blessings to all!
Niko

[gingerstidd]

The Doctors seem to think that most of my symptoms are in my head also, I can't seem to get referrals to specialists, I am so desperately in need of help.  I hope that you hang in there and keep trying to get help.  Someone eventually will listen.  Ginger

[denonct]

I'm 33 and for the past 5years have been in and out if the hospital with severe abdominal pain and vomiting, seizures, swollen legs and hands, tachycardis, and the list goes on. I have been diagnosed with Addison's disease and lupus and chronic pancreatitis....all of which have later been determined incorrect.  Lost my job due to illness. Have spent 40, 35, days at BI BOSTON,  and the better half of.the past 5 years coming a hospital bed.  5 miscarriages.  Now I'm being tested for porphyria....only after a doctor friend of.mine insisted I make my pcp test for it. She never heard of it and apparently over 50%of physicans have no idea about it either. I've had 7 stomach surgeries over the past 10 years to look for what's causing the weird and wide variety of multisystem symptoms. No one has a clue and to the point they now think its in my head and I get sad and depressed over that.  This has taken my life from me whatever it is and I just.want to give up at this point. I was found dead by my sister and mom a year ago and my sister got me back and continued CPR until medics arrived.....still I'm told its all in my head. So now in doing a 24 hour urine to test for porphyria.....however my doctor didn't listen when I explained that it is only going.to show in an acute attack via urine.  That I need to consult w a hematologist.....I'm running out of patience and again am ready to give up. Anyone have anything they think I should look into as well or amyone else out.there a medical mystery as I seem to be. I just feel very alone. My sister tries hard to help me as she is an RN but when my doctors tell me its in my head
.....well I just want to die sometimes amd I hate.that feeling. I had a great life. Job. Bright future and now I'm barely able to exsist. I take zofran three times a day in order to be able to eat at all without vomiting. Its not a life
.....I'm just exsisting and I'm tired

[sierranvgrl]

I have Hereditary Corproporphyria, which is very similar to AIP and have acute attacks as well. I am also symptomatic when I am not having an attack and it rendered me unable to work. I would love to compare notes or share information. The disease is so rare, it's very hard to find support. My mom had the disease and died from it at age 54 nine years ago. I am 43 now, and very concerned about managing the disease, as there is no real treatment or cure.

Take care!

[fedup1313]

i`m 56 and was diagnosed with acute intermittent porphyria (AIP) about 16 years ago.My case of AIP is causing me to think I need to see another DR. and see if  I can make some of my symptoms  show up less.What DR. do you go to ?My mom also had AIP, she passed away from cancer 3 years ago.Let me hear from you.I live in Mississippi.

[ddavio]

I am 50 and was diagnosed with Porphyria in 1976. My mom was the 44th reported case in the USA. I have had every problem there is when you have porphyria. I would love to compare notes, its not a disease many people understand, including doctors.

[IKnowYouHearMe]

There is a possibility that I have porphyria, but I've yet to be diagnosed.