Welcome to the new Cushing's Help and Support FAQ (frequently asked questions) page. This new area will be a compilation of our visitors most frequent questions. Questions and answers are still being added.
Please select either a category on the left, or type in a keyword to search the database of questions and answers. Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible. If your question is very urgent, you might want to check the message boards to see if your question has been answered, or add it yourself.
IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.
Help Yourself List of Categories
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How can I help myself?
Some helpful hints:- Make yourself an expert by reading everything you can get your hands on here on the boards and on the website at http://www.cushings-help.com.
- Find all the support you can get, check in with the board as often as you can. Often you'll find something helpful.
- Keep a journal of your symptoms or print out the checklist at
http://www.cushings-help.com/checklist.htm Keep your symptom list in
a notebook along with:
- Records of your medical history.
- Pictures, before you started getting sick and a progression, if you can.
- Questions for your doctor visits and make notes of the answers.
- Copies of any lab tests or scans you have done and their results.
- Take your notebook and someone with you when you visit your doctor. If you cannot take a friend or relative, take a tape player, so you're sure to have all the information for later. None of us can remember everything that is said during an appointment.
- Ask your doctor what kinds of tests s/he will run and be sure to
find out before hand what kind of preparation you'll need to do.
- Do you need to fast?
- Must the dexamethasone, or other medication, be taken at a certain time.
- Does the urine container have preservative? If so, what is it?
- Will any of the meds you are taking interfere with the testing?
- Read all you can before testing to be sure that the tests are run correctly
- If your endo says that everything is "normal" and there is nothing else for you to do, make sure you remind him that there is also cyclical (episodic, intermittent) Cushing's, and often it isn't "caught" in the first series of testing.
- If your doctor refuses to fun more tests or says that there is "nothing more to do", get another doctor. You can check the Compilation of Helpful Doctors List to help find someone in your area.
- Ask your doctor these questions, adapted from The Barbara Ann
Karmanos Cancer's Institute:
10 Questions Every Cushing's Patient Should Ask His or Her Physician 1. What specific type of Cushing's do I have? What stage? What does that mean? 2. What are all my treatment options?
3. Are there any clinical research studies underway for my Cushing's? What are the studies investigating? On what research are these based? What "phase" studies are they and what do you hope to accomplish?
4. Are all the medical personnel, endocrinologists, neurologists and Cushing's-specific surgeons on staff at this hospital/center certified by national boards in their specialty of Cushing's?
5. What is your specialty? What treatment alternatives would your colleagues in other specialties recommend? How many patients like me do you see a year? What kinds of complications are you seeing?
6. Can I have my case reviewed by a multidisciplinary team (that is, a team of Cushing's experts from different areas who will jointly review my case)?
7. What services are available for me and my family beyond treatment? (Such as patient educational programs, support groups, complementary therapies, and counseling.)
8. How long will I have to be treated? Will I be able to work during my treatment? 9. What are the success rates of the treatment for my type of Cushing's and what are/how common are the side effects (such as fatigue or pain) and complications for the treatment(s) you recommend? Are there medicinal or other ways to overcome these side effects or complications?
10. What can I expect for quality of life for the short term and long term? What should I be doing for my family/loved ones? - Use the Cushie Helper System
- Eat Well
- Food Journal
- Nutrition for Patients with Cushing Syndrome (National Institutes of Health, Clinical Center) - PDF file
- Helpful Hints For Dealing with Cushing's Symptoms
- Kate's Packing Suggestions For Surgery
- Kate's Pituitary Surgery Observations
- LindaP's Cushing's Tips
- Medical Journal
- Cushing's Help and Support Medical Journal (Excel Version)
- Stay Healthy
- Talk to Your Doctor
- On the Message Boards:
- Miriam says:
- Stay positive, and make sure you look after yourself properly.
- Learn to be selfish, so you don't aggravate the problem by doing too much.
- Respond to your body, not what other people tell you to do.
- Adrienne says:
- Cushies should feel free to apply for temporary disabled parking permits / placards.
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I need help posting on the message board. Can anyone help me step by step?
- First, click here to get to the boards.
- If you haven't registered already, click here.
- Find the board that you would like to post on.
- If you are posting a new topic, click on the "Post New Topic" icon that apears at the top and bottom left of the list of threads and on the individual threads.
- Fill in a Topic Title
- Write your post.
- When you are done writing, click the "Submit" button.
- If you are replying to someone, you can either click the "Quote" button on the top right of his or her post or click on the "Post Reply" icon that appears at the top and bottom left of the list of threads and on the individual threads.
- Write your post.
- When you are done writing, click the "Submit" button.
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