User Tag List

Likes Likes:  34
Page 2 of 2 FirstFirst 12
Results 11 to 17 of 17

Thread: Second Opinion

  1. #11
    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.

  2. Likes Masha liked this post
  3. #12
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    You are relatively close to both Rochester (Mayo) and Cleveland, if there is not a qualified specialist closer to you.

    Based on my personal experience, I would think twice about the nasal biopsy; it is an invasive procedure and can cause permanent harm, as it did in my case. If the serology is convincing for vasculitis, there may be no need for it.

    Both of the physicians Pete mentions are highly respected specialists in GPA.

    Best wishes

  4. Likes annekat liked this post
  5. #13
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    76
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    I would also recommend to convey a sense of urgency because your daughter needs see the Weg specialist within a week instead of several months, these doctors are very few and tend to have long waiting lists.

  6. Likes annekat, Dirty Don, Alysia liked this post
  7. #14
    Join Date
    Sep 2013
    Location
    England
    Posts
    754
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Hope you get an appointment and some answers soon. It very much sounds like Wegener's, but even if it's not, you need to get to the bottom of it.
    Keep us updated with how you get on.
    Diagnosed April 1995

  8. Likes Alysia liked this post
  9. #15
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,025
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Welcome to the family, Christine. I am glad you are going for a second opinion with a vasculitis expert.

    It sounds like wg symptoms. Wg can be smoldering for years while one can have normal labs. But the symptoms are there, and it should be treated.

    Also, I agree with Tom about avoiding the nose biopsy: I had it twice and it turned out negative. False negative. But docs considered it and delayed a serious treatment for my wg until the bridge of my nose collapsed and I developped a saddle nose.

    A real WG expert will know to diagnose it, even when the labs are ok. Make a list of all the symptoms and if there are anything else which might be related. For example, I had gums bleedings and rash which were wg related.

    Sending prayers to your daughter and you. Please update us.
    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.

  10. Likes drz liked this post
  11. #16
    Join Date
    Nov 2018
    Location
    Nashville, TN USA
    Posts
    58
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    This is a huge problem - dealing with medical professionals who know nothing about vasculitis. More common than I care to belabor! I'm so sorry your daughter is sick - not easy! Just because she has a negative ANCA "the blood work came back normal" doesn't mean she doesn't have vascultitis. Yes, 90% or so of Wegener's patients have a positive ANCA - but about 10& don't. Also there is an ANCA related vasculitis previously known as Churg-Strauss and now called Eosinophilic Granulomatosis with Polyangiitis (EGPA) in which about 60% of patients don't have a positive ANCA. EGPA can be quite similar to Wegener's. Sometimes eosinophilia gets overlooked and blamed on allergies. In EGPA eosinophilia in peripheral blood is very high. Also there is Polyarteritis Nodosa - also ANCA negative and it too can cause many of the same identical symptoms. Chest X-rays are notoriously unreliable at detecting early or mild lung involvement. A CT scan is required to detect significant changes such as infiltrates, nodules and the like. The top advice out there for those who think a vasculitis diagnosis is possible is to make an appointment with a vasculitis specialist at a vasculitis center. Perhaps contact the Vasculitis Foundation (http://www.vasculitisfoundation.com) to see recommended centers. Query the forum if you need recommendations near you. Best of luck on receiving a speedy diagnosis for your daughter.

  12. Likes seied, bobjannj, Masha, drz, Alysia liked this post
  13. #17
    Join Date
    Jun 2017
    Posts
    16
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Second Opinion

    Hi Christine,
    I hope you were able to get an appointment for a second opinion. When my health started snowballing, after being in the hospital for two weeks they wanted to remove part of my lung, as they couldn't diagnose me and wanted to remove the legions in my lungs. I told them no and asked to be transferred to one of the larger hospitals in Boston. The Boston hospital was able to diagnose me after another week. So yes, a second opinion is wise! And as others stated Wegeners can be very difficult to diagnose. The doctors try their best, but not everyone knows everything. My first anca test came back negative and they never found anything definitive from the two lung biopsies they did. Praying for answers and healing for your daughter!

  14. Likes annekat, seied, Alysia liked this post
Page 2 of 2 FirstFirst 12

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
  •