MIA for 3 years.. lol

Discussion in 'Fibromyalgia Main Forum' started by Alyndra, Jan 15, 2009.

  1. Alyndra

    Alyndra New Member

    Well, I hate to say.. but it's been about 3 years since I last signed in. A lot has happened, and I just recently had a doctor remind me about the days of "when they thought you had FM" and it was that little bit of a reminder I needed of all the wonderful people that were here to help when no one else could figure out what was going wrong.

    Not too long after I last signed in, I made it to a round of new doctors and diagnostic centers.
    I had originally been diagnosed with Fibromyalgia, and Metabolic Syndrome X. Turns out those were just the easy ways outs for the doctors in my area. When I finally got to a doctor who was willing to address my ever increasing allergies, anaphylaxis, and everything else.. The first words out of his mouth was "Fibromyalgia isn't even an option".

    It would have explained the constant pain, but it didn't explain the breathing problems, digestive problems, allergies, or anything else. After a lot of hospitals and testing, I was finally diagnosed with Porphyria. I lack the ability to naturally carry oxygen in my blood, which over time was damaging my muscles, internal organs and tissues; which explain the constant pain, the lack of proper organ function, and my many allergies - including the sun. The Metabolic Syndrome X turned out to be non existent as well, which explained why the pills never worked for me for long. Due to the damage in my body, there was damage done to my pancreas along with everything else, and it essentially broke the insulin regulator function. After finally gaining 120 lbs in 4 months, and seeing an Endocrinologist that finally told me "there's no light at the end of the tunnel for you" I went to a clinic that works with nothing but natural foods, perfecting their combinations, and regulating the proper time to eat them. Within a year, I lost 130 lbs and haven't gained back any of the weight. No needles, no miracle pills, just the right combination of foods at the right time of the day to naturally regulate my insulin production.

    On top of the new diagnosis's to replace the old ones, I also found out I have what's called Auditory Processing disorder; along with some minor brain trauma from a number of untreated concussions and a neck injury. The trauma explained the ringing in my ears, and the Auditory Processing Disorder explained the constant mental fog I was in.

    I still have the pain, and most all other problems. Unfortunately the doctors were too comfortable with FM dx and I spent so long in untreated Porphyric attacks, that there was permanent damage done to my body.

    The most important thing I wanted from coming back to the board, is to tell anyone who isn't comfortable with their doctors diagnosis - to always keep looking. My aunt was diagnosed with FM almost 20 years ago, and died just a few years before I was diagnosed the same. I later learned that the type of Porphyria I have is hereditary, and doctors recently after going back and reviewing my aunts medical files realized she carried the Porphyria gene as well. She accepted her original diagnosis, and started going through organ failure until it finally hit her heart.

    I'm certainly not saying that this applies to everyone with FM, for some people it's unfortunately the proper dx. For others though that feel deep down that it doesn't explain everything, never stop trying. There are doctors out there willing to solve the mystery, the first mystery is just finding who they are ;)
  2. hollie9

    hollie9 New Member

    And it has sure killed or paralyzed many or my aunts, uncles, cousins. You are very lucky to have recovered. You don't say how old you are but after about age 40, it's my understanding you are probably out of the woods for porphyria.

    Some say there is a connection between porphyria and CFS, do you know anything about that?

    Where did you get treatment? The only doctor my family could find that knew anything was from Australia.

  3. HeavenlyRN

    HeavenlyRN New Member

    .....I had never heard of this illness until today, when I read about it in 3 different threads. So glad you finally got a proper diagnosis, but I am sorry that this was the diagnosis that you got.

    In reading about it today - after I "googled" it, it sounds very scary. You certainly have been through the wringer but sounds like you're finally getting things under control. That's amazing about your weight gain - eventual loss. Sounds like that endocrinologist was a real winner - NOT! He/she sounds like the first endo my husband went to. We finally had to go out of town to find a doctor who knew what he was doing.

    I'm relatively new here (several months) so obviously I don't know you. But I hope you'll continue to come back and keep us updated.
  4. rockgor

    rockgor Well-Known Member

    Glad to hear the good news. Do you think other relatives may have this condition?

    I think Porphyria was what old King George III had. (We all remember he was the
    wicked king during our Revolutionary War.)

    Hope your good luck and improvement continue.

  5. JewelRA

    JewelRA New Member

    Wow! I am glad you got the proper diagnosis, finally!

    May I ask, how is porphyria diagnosed and treated?

    Thank you!
  6. HeavenlyRN

    HeavenlyRN New Member

    Don't I feel like a weinie!! :) I hardly ever remember to check for dates. I think I shall be more vigilant from now on!

    Good eye Susan!!
  7. JewelRA

    JewelRA New Member

    Thanks, I hardly ever check dates either! Duh! :)~