User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Top Questions to Ask Dr When Newly Diagnosed?

  1. #1
    Join Date
    Mar 2013
    Location
    Raleigh, NC
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Top Questions to Ask Dr When Newly Diagnosed?

    I would love to solicit a list from those of you who have had this disease a while of the top questions to ask my dr's. I am JUST recently diagnosed and have started Retuximab treatments (have had 1 round - 3 more to go). I have my first post hospitalization Dr's visit with my Rheumatologist this Weds and want to go in fully prepared with GOOD questions.

    What are the most important questions I should ask?

    Any advice you can offer would be appreciated in a HUGE way!

    Thanks,
    Stormi

  2. #2
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    hmmmm...first I would want to know how much docs know about the disease and if they've treated it before and/or if they are consulting a 'WG' doc from somewhere. Then would want to know more about each drug: why is it being administered as opposed to mtx/Imuran and so on. The pred dose you're on is pretty common at the start of treatment. You might consult Sangye/Phil/drz on here as they have great knowledge of how WG goes down the line. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #3
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    You are very close to some of the best Wegs docs in the world. Dr. Ronald Falk is a Nephrologist at UNC at Chapel Hill. And Nancy Allen is a Rheumatologist at Duke University in Durham.
    Phil Berggren, dx 2003

  4. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,371
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Stormi,

    Welcome to our forum. I hope you get the encouragement and information you need here.

    Some of the questions you may want to ask include drug side effects to be aware of and what to do if they appear, what's the best way to contact your doctor in both crisis and non-crisis situations ( this disease can present some odd symptoms - I once had persistent hiccups for a couple of days during a flare), symptoms of a flare and what to do. If your doc is not a wegs/Vasculitis specialist, ask who he consults with regarding treatment and also about the number of weggies he treats. Phil has already given you the names of wegs specialists in your area. I urge you to see one soon (if you haven't already) and don't be too concerned about a doc's feelings.

    You will probably have periodic blood tests and urinalyses. Ask to be given the results and explanations of what they mean. My doctors post my lab results on line via their hospitals' MyChart facilities. I also get CDs of CT scans, bone density tests, etc. These are important to have if you're in a situation where your wegs doc is in a different hospital than where the tests are done. My wegs doc is at Cleveland Clinic, but most of my labs are done at my family doc's office at Ohio State near my home. (Cleveland is 2.5 hours from home and I have labs done monthly in Columbus now.)

    Hope this is helpful.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  5. #5
    Join Date
    Apr 2010
    Location
    Dallas, TX
    Posts
    409
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Stormy,

    I am sorry for your diagnosis, but you are on a very good site to obtain information regarding this disease. There is a steep learning curve with this diagnosis, and you may find that in a short period of time you may know more about vasculitis than some medical practitioners do. That is why Don, Phil and Pete all basically referred you to one of the Weg specialists at one of the major Vasculitis Centers (Vasculitis Foundation)

    You will find these docs have speciality degrees in nephrology, rheumatology, pulmonology or ENT....so it might be to your benefit to seek a specialist that has expertise in the specific organ system that was of primary damage with the onset of your disease. My daughter's primary organ effected were her lungs, so she was referred to a pulmonologist at the Mayo Clinic, Rochester (Ulrich Specks, MD). She is now treated locally (in Texas) but things were brought into initial control and we still consult with her specialist at Mayo, as needed.

    Most of the major medical centers that have a Vasculitis clinic have a group of specialists that are able to address the muti-organ involvement that can comprise the ANCA vasculitides. I will repeat Pete's message. Get an explanation for anything you do not understand, and it would be of benefit to start a binder to keep your lab tests, blood studies, questions and notes etc. in. No one will advocate and organize your information as well as you can do yourself. Stay on top of results, and don't wait to get treatment for symptoms ASAP at anytime down the road.

    Best wishes and keep us apprised of your progress....there is a wealth of knowledge in this group of lay persons.

    Jane, mom of Alison (Weg/GPA, 2006, Crohn's disease 2000)
    Last edited by Palmyra; 03-05-2013 at 02:19 PM.

  6. #6
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi stormi.
    I suggest you ask your doc which signs are alarming and what to do in each case.
    you can ask if there are some alternative options to treatment.
    I suggest you also find a doctor who is available in SOS cases, by phone or mail. I can send mail to mine and get his answer in few hours.
    Phil, how do you know so much ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #7
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    I have had Wegs for 10 years, I have been on this Forum for 5 years, and I have a world class Wegs doc.
    Phil Berggren, dx 2003

  8. #8
    Join Date
    Mar 2013
    Location
    Raleigh, NC
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    THANK YOU all so much for all of this info!

    I am going to write my list tonight from your posts and also going to call the Dr's that Phil has suggested. Phil, you are seriously a HUB of Weg information...you need a cool nickname to compliment your wealth of information you have! I am gonna work on that

    Will report back on how the dr's visit goes!

    Thanks you guys,
    Stormi

  9. #9
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Most call me Dr. Phil or Batman.......lol
    Phil Berggren, dx 2003

  10. #10
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yes Stormi, Phil certainly is one of the ones on here with a wealth of WG knowledge and is always happy to help (along with many others).

    Please don't give him another nickname ........we couldn't stand it

    I found myself asking three different specialists (the first time I saw them) - what do they think would be the cause of my WG and what do they think my treatment plan should be. They could never fully answer the first question, one even went as far as saying ..... lets work it out together and we will both be rich.

    Good luck on Wednesday
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •