I got diagnosis on Friday from Rheumy, but also other news today

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 26, 2006.

  1. TerryS

    TerryS Member

    Hi Everyone:

    I FINALLY got in to the see rheumatologist on Friday. He was able to give me a definite diagnosis of FM. I had NO IDEA I had all these tender spots all over my body.

    He also ran yet MORE blood work so that he could rule out lupus, as well as some thyroid disorders and a few other things.

    HE called me today (which I figure is always a bad sign if the nurse doesn't call). Anyhow, he informed me of some yet more abnormal blood work (mitrochondrial antibody and positive redo of actin smooth muscle antibody) that came in and that he wants me to see a Gastroenterologist (appointment next Monday) for primary biliary cirrhosis (a cirrhosis of the liver which is apparently yet another autoimmuine disorder).

    He mentioned that they (the GI) will definitely be setting up a liver biopsy for me. From what I've found on the internet based on my labs, it's a slam dunk diagnosis already. Just need the biopsy to confirm what stage I'm in...just really stinks. I've been very angry and crying all afternoon and in denial...it's like a death sentence but you don't know if it'll be 2, 6, 10, or 15 years! I guess on the positive side, we'll have much advance notice once things start going down hill to end stage...and then it's just pray for a liver transplant.

    So, I've had my pity party all day...and, to top it all off, I STILL think that I have CFS in addition to the FM 'cause my throat is sore every single day, and other symptoms that I can't seem to recall right now.

    I see my PCP on Friday, as well as the neurologist again in followup to the MRI on the brain that he did. Hope all looks well in that regard at least! I've got enough crap going on.
    [This Message was Edited on 09/27/2006]
  2. Empower

    Empower New Member

    Sorry you didn't get good news

    We will be thinking of you and praying for you
  3. mollystwin

    mollystwin New Member

    I am so sorry about your news!! ((((((((((hugs)))))))))))

    I don't know what else to say except that I will say extra prayers tonight for you!!
  4. TerryS

    TerryS Member

    Thanks for the extra prayers. That's what I really need and want. Our Lord knows my destiny and is in total control.

    Nothing WE can do about it!

    TerryS
  5. boltchik

    boltchik New Member

    Sorry about your news. I will say a prayer for you tonight. On the good side, I think it is wonderful that you have such faith in God. He sees us through our dark hours. I think it's okay for you to go through your sadness over the situation. But it seems as though you already have enough faith to get you through the rough part and looking toward the future for a transplant. You sound very brave!!! I pray that you are healed and that a plan for your recovery reveals itself soon! Take good care of yourself, Kim
  6. TerryS

    TerryS Member

    Hey Everybody: Thank you for your support and prayers. I re-read my post from last night and I sure was going through a "pity party" big time!

    I think I'm still in shock, but I praise GOD that I found out about it now and have time to reevaluate my life, my attitude, and what's really important. In a way, you could say this is God's blessing on me that I have found out. So, I am praising him for that.

    Once I see the GI doc, I'll post again and let everyone know what he said.

    TerryS
  7. Greeneyes2

    Greeneyes2 New Member

    Hi

    My Mom had PBC for 11 years before she passed away from something entirely unconnected to it.

    The Liver Specialist she saw at the Mayo Clinic in Rochester, MN, told her that PBC is a very slow progressing disease and that she would die of something else before it ever killed her and he was right. She also had FM and other problems.

    I thought maybe this would be a little hopeful for you, I am very sorry you have been dx with PBC and hope everything goes well for you.

    Gentle hugs,
    Denise


  8. TerryS

    TerryS Member

    Thank you for telling me about your mom. Autoimmune disorders stink!!! The rheumy told me that there is some very good medication available (don't remember the name) that should slow down the progression of the disease. Surely I am in the early stages of this as I don't have any symptoms other than the fatigue (and who knows, my fatigue may be from the FM or my Epstein Barr or whatever).

    Please tell me, was your mom very fatigued from the PBC and FM?

    Thanks,
    TerryS
  9. kirschbaum26

    kirschbaum26 New Member

    Dear Terrys:

    Sorry to hear about your bad news. Yes, it must be terrible to know that if you do indeed have PBC that it can be a death sentence, but it may take many years, I also have a few friends who have gone through this with their parents. All are still alive and I believe that one of them has been living well with this dx for 14 years now. I hope that you get the answers you are looking for.

    You are in my thoughts and prayers.

    Ingrid
  10. jole

    jole Member

    I am soooo sorry. You remind me of my niece who had cancer at age 29. She was very close to not making it, had chemo, radiation, etc. BUT she had the most unbelievable strength and belief in God. She is now doing well. Prayer and positive attitude will get you where you need to be, I am sure of it.

    Stay strong, and lean on all of us for support. Keep us posted, please.

    Friends - Jole
  11. hob

    hob New Member

    Keep your chin up. We're here for you. I will keep you in my prayers

    hob
  12. TerryS

    TerryS Member

    I can't tell you how much I appreciate your kind words, encouragement, and prayers. I am truly a blessed woman to have found this message board!!!

    I had a knock on my door today and it was a delivery woman with flowers just for ME! Turns out they were from my employer...very sweet of them!!!

    TerryS
  13. Please don't panic, wait and see what the gastro dr. says. I have a nephew that was BORN with cirrosis of the liver. He is now in his 30's and doing great, just cannot drink and gets check ups regularly. Good luck !
  14. shar6710

    shar6710 New Member

    I'm so sorry about the bad news.

    Try not to worry too much before your biopsy results,
    you'll just end up making your other symptoms worse.

    I hope your cute furry baby will cuddle with you and make you laugh today.

    Thinking of you,
    Shar
  15. TerryS

    TerryS Member

    FibroButterfly - Thanks for the info. about your nephew. That sure makes me feel encouraged.

    Shar - Not worrying is very good advice. I'm actually feeling a lot better about it today. I was just in such SHOCK yesterday...who would have thought!!!

    As far as my "furry baby", he's adorable and I love him to pieces, but he's not much of a cuddler...way too hyper right now (still a pup). Best I can hope for is him to lie down on the floor next to me and behave himself!

    TerryS