User Tag List

Likes Likes:  34
Page 1 of 2 12 LastLast
Results 1 to 10 of 17

Thread: Second Opinion

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Feb 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Second Opinion

    Hi. I am new to the site and may be jumping the gun but you all seem like a good group of people and a non-medical opinion would be appreciated. My 20 year old daughter has been having joint pain,fatigue, nosebleeds, and constant runny nose among other issues for years. Her pediatric Rheumy said maybe fibro or spondyloarthropathy. She hasn't been on any meds for the past 5 years so it isn't degenerative as far as the joints go. Summer of 2017 she had a really bad sinus/double ear infection and in November she was coughing up blood. They couldn't find a reason for it. Fast forward to Oct 2018. Another sinus infection and the urgent care doc found a hole in her septum. This is my concern. The ENT said that you don't just get a hole in your septum and none of the usual reasons applied to her. He referred her to a Rheumatologist to check for Wegners or Lupus. All the blood work came back normal and so did the chest x-ray. The Rheumy said nothing is wrong but nobody can explain the hole in her septum or other symptoms. I was not really comfortable with that doctor. So, should she get a second opinion. Or am I just being an over concerned mom? Be honest. Thanks so much!

  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 Re: Second Opinion

    As you should be a concerned mom...seems the doc is ignoring or not knowledgeable enough to recognize obvious concerns. You don't even know if the doc ordered the right tests. Don't know where you're at, but I'd be looking for another rheumy soon. Best to you & your daughter.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. Likes annekat, bobjannj, Masha, seied, Alysia liked this post
  4. #3
    Join Date
    Feb 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Thanks for your kind words. I think we will get another opinion. We are from the Chicago area. I think there is a good doc at Northwestern. Anybody know of someone near Chicago they would like to suggest?

  5. Likes Alysia liked this post
  6. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    The ENT may have known more than the rheumatologist. He could have done a nasal biopsy quite easily, and the rheumy could have referred you back to him for that. Nasal biopsies aren't always conclusive, but mine was, and it would be worth a try. My ENT just went ahead and did one once he saw my saddle nose and a hole in the bony part of my septum. And yes, you should find another rheumy and make sure he or she has experience with WG. The symptoms you describe sound like classic WG/GPA. Being from the Chicago area, I'll bet someone here can make a recommendation.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 02-11-2019 at 07:05 AM.
    Anne, dx'ed April 2011

  7. Likes Masha, Alysia, Dirty Don liked this post
  8. #5
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    There are some vasculitis docs in Chicago:
    https://www.vasculitisfoundation.org...l-consultants/
    Last edited by Pete; 02-11-2019 at 01:47 PM.
    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

  9. Likes annekat, Masha, Alysia liked this post
  10. #6
    Join Date
    Feb 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    I followed your link and found someone that specializes in vasculitis. Am waiting to hear back on getting an appt. I will ask if she has specific experience with Wegners. I think she does. Thanks for the link!

  11. Likes Alysia liked this post
  12. #7
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    313
    Post Thanks / Like
    Mentioned
    18 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Hi Christine,
    You are not over concerned, you are rightfully concerned. I just messaged one of our members, John. I seem to remember he goes to Loyola in Chicago and Cleveland Clinic. I am nowhere near so can be of no help in that direction.
    I can tell you I was never diagnosed for years. Had many unnecessary sinus surgeries. Was told with my Spondylitis to go to PT, and then told to have surgery. I did not.
    From what I have learned Wegeners can be tricky to diagnose. If they are only going by C-Anca readings that can be deceiving. My Rheumatologist told me there are many things to take into consideration. Also, did they take a biopsy of her sinus? Absolutely necessary.
    Pete gave you good advice about the vasculitis site. Yes, she should definitely have a second opinion, by someone experienced in treating this disease. Once you follow our site you will see we ask questions, assert ourselves and do not hesitate seeking fine medical care. I know that is easier said than done, but stick to what you know in your gut is true and follow that instinct.
    Masha

  13. Likes annekat, Alysia liked this post
  14. #8
    Join Date
    Feb 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Hi Masha,
    Sent a request for an appt with a doctor from the link Pete sent. When we see her I will ask for a sinus biopsy if they don't suggest it. She seems to have experience with Wegners but I will confirm it when they call back. Thanks so much!

  15. Likes Masha, Pete, Alysia liked this post
  16. #9
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    313
    Post Thanks / Like
    Mentioned
    18 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Christine, I just heard back from John. He goes to Clevend Clinic. But he said if he was looking for a local doctor he would go to Northwestern, Dr. Amy Archer
    Masha

  17. #10
    Join Date
    Feb 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Masha,
    Great. That was the name I found when doing some research too. Hopefully it won't take to long to get an appt. Just waiting to hear back from them.

  18. Likes Masha liked this post
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
  •