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  1. R

    Mystery illness - seeking opinions

    Thanks for your replies! I have looked into POTS and even EDS but no testing yet. At this point I'm thinking of traveling to a Mayo Clinic. Does anyone have experience with them? I feel like they're my best bet for diagnosis. I really want to thank you guys again for hearing me out. ❤️
  2. R

    Mystery illness - seeking opinions

    I found out Vanderbilt requires a referral. I'm waiting on UT to call me back so hopefully they have better news for me. I'm sort of worried about asking my doctor for the sweat test. She's always been helpful when I felt something needed to be done so I hope this will be the case now. She's out...
  3. R

    Mystery illness - seeking opinions

    By the way, I'm pretty convinced I should see a CF specialist at this point. I will call them tomorrow to find out if I need a referral. Thanks again for the support. I'll post updates. I'm sitting here now with this severe left abdominal pain. Comes on gradually and escalates. Just plain awful.
  4. R

    Mystery illness - seeking opinions

    Glad your daughter was so easily diagnosed. I know "just knowing" can take so much stress away. I was wondering if you'd mind sharing a little more information about some of the symptoms your son experienced that led to eventual diagnosis. Thanks so much for your reply!
  5. R

    Mystery illness - seeking opinions

    I also just ran across something interesting during some research: "In a group of patients referred for evaluation of idiopathic pancreatitis, there was a strong association between mutations in the CFTR gene and pancreatitis." ...My mother was hospitalized for like a month about a year ago with...
  6. R

    Mystery illness - seeking opinions

    Bill, I just saw your comment about seeing the CF doctor first. I will call them tomorrow and see what they have to say. I wonder if I need a referral. It has been suggested to me by a physicians assistant that I should just go to a Mayo clinic to figure out what's wrong. My doctor recently...
  7. R

    Mystery illness - seeking opinions

    Thank you both so much. I have had my lungs looked at (x-rayed and I -think- ct scanned) and listened to multiple times along with standard pulmonology tests and everything has always looked fine there. I just don't understand why I'm having so many daily problems breathing if everything seems...
  8. R

    Mystery illness - seeking opinions

    Bill, thank you so much for replying so quickly. Do you think I should see this pulmonologist first? Like I said, I've seen an "asthma" doctor before who said my breathing tests were all normal. I question what this pulmonologist would do differently than the first one I saw. I live between...
  9. R

    Mystery illness - seeking opinions

    Mystery illness, should I be tested? Hi! I guess I am just looking for opinions on whether or not I should seek CF testing. I'm sorry this is so long! Thank you in advance to anyone who can offer some advice. I've been "sick" on and off for a few years now. As a child I had strep throat A LOT...
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