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Newbie´s questions

Hello good day,im newbie!
Do you have pain in your neck or near your neck?
Which doctor diagnosed the disease?
Did your pancreas come out good or bad on the MRI?
Do you have rhinitis and a runny nose all the time?
Do your symptoms get worse after exercising?Thank you

  1. Thanks for taking the time to reach out; we're happy to have you in our community. How are you doing today? If you don't mind me asking, could you share any specifics on your recent diagnosis? The questions you've listed here in your post are all great, and I'm hoping other community members will chime in to share their personal experiences. In the meantime, I am going to share some articles written by our Health Leaders that I think you will find helpful. Are you experiencing the symptoms that you're asking about here? Being newly diagnosed can be very overwhelming as you're trying to process all the information and adjust to what the new "normal" will look like. Please know our community is always here for you; don't hesitate to reach out! Below, you will find some articles that contain a lot of helpful information. When you have time to review, please let me know your questions!
    https://cystic-fibrosis.com/answers/frequently-asked-questions-cf
    https://cystic-fibrosis.com/living/year-review-2019
    https://cystic-fibrosis.com/infographic/chronic-pain-impact
    https://cystic-fibrosis.com/healthcare-team
    https://cystic-fibrosis.com/pancreas-issues
    https://cystic-fibrosis.com/living/sickness-overload
    https://cystic-fibrosis.com/exercise

    I realize I am sharing a ton of information, but I wanted to make sure I touched on all your topics listed - Please let me know how I can help you get through the information and if you need anything! Sending you strength and support every step of the way! -Beth (Team Member)

    1. Hi, I don't know if I have it or not. I'm looking to at least get x-rays to see what I have in my lungs. I think a CT scan is better, which is more precise. Unfortunately, doctors seem to know very little about this.
      Some of the FAQ questions don't work well, they appear blank.
      And why didn't you answer my questions? Thanks.

    2. My apologies for not being able to answer your specific questions. Unfortunately, I do not live with CF, so I'm unable to speak to what it's like. I want to help get you some insight and support so you can figure out what you are experiencing. Can you share more about the doctor you have seen/spoken with? In my time moderating with Health Union, I have encountered many community members who have had to step up and be their best advocate by getting second, third, and sometimes fourth or fifth opinions to find the "right" doctor to jump on their care team. It's no easy task, but you deserve the answers and support. Sending you positive thoughts & vibes. -Beth (Team Member)

  2. hello?

    1. someone else?

      1. hi Don, just wanted to check in on you and see how you are doing? Were you able to get xrays done or a CT scan? I am hoping you have some more information from your doctor about what is going on. Please let us know which link above did not work for you. Jill (Team Member)

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