Questions to ask

Before your apointment, think about the sorts of things you'd like to know more about. Jot down your questions, and take a pen and paper to note down answers.

  • Is there any doubt about my diagnosis?
  • How many cases of PSC have you managed in the past?
  • How many PSC patients are registered in this clinic?
  • Are there other hospitals nearby that specialise in PSC?
  • What is available to treat my symptoms?
  • How often will I be seen in this clinic?
  • What monitoring tests will I need, and how often?
  • When will I receive the results of any tests?
  • Can I have my bloods taken before my next appointment, rather than today?
  • Should my bloods be taken at the hospital or at my GP's?
  • How will my GP be involved in my care?
  • What symptoms would you expect me to seek immediate medical care for?
  • Should I contact my GP or the hospital?
  • Are there times when I should go straight to A&E?
  • How does the PSC affect my other conditions?
  • When I leave here if I have any questions how will I get them answered?
  • Is there special family planning advice I need to follow?
  • Can I take Erectile Dysfunction drugs?
  • I have been very depressed about my diagnosis. Is there any counselling for people coming to terms with critical illness? If not, is there someone locally that I could see privately?
  • On my next appointment will I be able to see you again?
  • Will you confirm my condition and programme of monitoring to my GP?

 

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Diet/nutrition

  • Do I need a special diet?
  • Can I see a dietician?
  • Are there any foods I should definitely avoid?
  • Can I drink any alcohol? How much?
  • Can I take fish oils? If yes what dose?
  • Can I take milk thistle? If yes what dose?

 

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Tests

  • How often will I have a blood test?
  • Can I have copies of my blood test results?
  • How often will I have an Ultrasound scan?
  • How often will I have an MRI scan?
  • How often will I have a colonoscopy?
  • If I do not currently have ulcerative colitis, how often will I have a colonoscopy to look for ulcerative colitis?
  • Will I be tested for osteoporosis? How often will I have a dexa scan?

 

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Medications

  • Should I take Urso? If yes, what dosage?
  • Can you review my current medications?
  • What pain relief am I allowed to take and how much?
  • What medications are available to treat my symptoms?
  • What about tanning beds and sun bathing?

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