User Tag List

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

Thread: Diagnosis pending - new member from SD

  1. #1
    Join Date
    Jun 2010
    Posts
    2
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Diagnosis pending - new member from SD

    Hi - I'm new from S.Cal. and likely have limited W's, at least according to 2 pulmonologists, and 1 of 2 rheumatologists, though the 1 rheumy who has the most experience is not convinced and 2 ENTs think it's a virus causing recurring tracheal stenosis. Any advice on getting a diagnosis? How long did it take for confirmation of W's? My pulm's keep telling me of patients who didn't get a positive ANCA for 7 years; it's been @4 yrs since first symptoms for me. ANCA and other blood tests normal, tracheal stenosis / inflammation comes and goes; not yet on MXT b/c last flexible bronch showed no signs of inflammation ("just" a paralyzed vocal chord attributed to, as usual, some mystery virus). Prednisone for several months didn't stop recurrance of tracheal stenosis after laser excision w/ or w/o stent (stent was a fiasco, even being on drug for CF [pulmozyme] 2/day + 4/day saline breathing treatments didn't stop mucus build-up). Still on the pulmozyme 1/day to deal w/ mucus, though docs seem to ignore that symptom; guess the tracheal stenosis and mostly paralyzed vocal chord are more interesting. Stenosis seems under control for now, after 2 dilations. Still not sure if it's W's or if I'll ever find out, so any advice is welcome.

  2. #2
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Linda, welcome to the forum.

    It sounds like you desperately need to find a Wegener's specialist! Your current docs sound like they are out of their depth and they will kill you if you have the disease and do not receive the correct treatment.

    Wegener's is not easy to diagnose unless there are one or two indicators showing that do not usually appear with other diseases. Tracheal Stenosis is quite a strong pointer as would be a biopsy showing the presence of granulomas. ANCA is not a reliable indicator, just another tool in the box. Diagnosis is usually made using observation of all your symptoms and scoring them according to the Birmingham Vasculitis Activity Score (BVAS).

    Someone will be along soon to help you find the right specialist for the job.

  3. #3
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Linda, I agree with Jack. Need to see one real soon. Go to the Vasculitis foundation web site. I go to the Cleveland Clinic and see Dr Carol Langford, she is a Wegeners specialist. There are more very good Wegener specialist and some on this forum with be saying something soon. You want one that see's over 100 patients with WG. Someone on this forum recently died after three months being diagnosed with Wegeners disease....he did not see a Wegeners specialist..he was young...38 years old.

  4. #4
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Also, the vasculitis foundation is having its conference in Long Beach on July 30-August 1 (patient conference). Would be a good place to see all the top docs in one place and potentially get a question or two answered. I'm going to that. I also have subglottic and tracheal stenosis, but mine isn't transient. The surgeon cut into the scar tissue as well as balloon dilated it and so far so good (had it done in March). I was reading on another board about someone with transient TS. I didn't even know that was possible.

  5. #5
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Linda, I agree with the others-- you need to get a confirmed diagnosis and be treated by a Wegs specialist. Elephant mentioned Mark, the member who died recently. He was diagnosed with sinus-only involvement but died 3 months after diagnosis due to silent, severe Wegs destruction of his heart. Please don't wait. Contact the Vasculitis Foundation for help finding a Wegs doc in your area or travel to a major center.

  6. #6
    Join Date
    Jun 2010
    Posts
    2
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default thanks

    Thanks for the advice -- I will look into W's specialist, but I'm pretty sure I've already seen the specialist at (what I believe is a pretty well-respected teaching hospital) at UCSan Diego: the rheumotologist who said, essentially, "All the tests are negative for W's, I know W's, you don't have W's; maybe you did before but you don't now, and since the only real treatment consists of drugs that are basically poisons, I'm not putting you on anything." I'll have to push more about how many cases he's treated and others in the area.
    Response to Jan - you prob'y don't need to be told this, but be sure to follow up more than the average time after the tracheal excision/dilation. I've had the laser excision a few times -- every time, I was fine for the typical 3-4 month recovery period; I didn't start having problems (the same area scarring over and narrowing) until after they pronounced me cured (well, the first time; after that, they knew better than to get too optimistic). Hopefully you will not have a similar reoccurance!

  7. #7
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by LindaKay View Post
    the rheumotologist who said, essentially, maybe you did before but you don't now,
    I'm afraid that just can't happen, there is no cure. Unless he meant that it is now in remission? He is right about the treatment, it can be highly toxic and I understand his reluctance to treat you without a confirmed diagnosis - it is a problem isn't it?

  8. #8
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    [QUOTE=LindaKay;18074] "All the tests are negative for W's, I know W's, you don't have W's; maybe you did before but you don't now, and since the only real treatment consists of drugs that are basically poisons, I'm not putting you on anything."

    The thing that concerns me most about the expertise of this Doc is his "maybe you did before but you don't now", he should know that you either have Wegs are you don't. I agree with his caution of putting you on the treatment drugs, they are toxic. I have to agree with the others if he hasn't treated at least 100 patients then you should get a consult from one of the docs on the Vasculitis web site.

  9. #9
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi, Linda -- yes, I'm pretty sure that I will be having a follow up every six weeks or so (full scope down to the first couple of rings of the trachea) until the doc finds something. It is reassuring to me that he says that I will be able to feel it before he will see it with the scope, so I should just come in when that happens. In any case, it doesn't mean he would treat it right away, and given that the surgery isn't painful in anyway and I've already been forewarned that I will have to have a few no worries there.

    What are they treating your wounds with once they laser you (which is somewhat controversial in itself, as I'm sure you know because of the belief/research that shows it promotes more scarring). Of course research in the area is done on so few patients that I think a case could be made that docs are just out there doing whatever they believe works in their own population. And, of course if your docs don't believe that you even have WG then they may not believe the risk of scarring and recurrance is as great as it would be for me. In any case I received swabbing with chemo drugs (myomicin) steroids and antibiotics after the incisions were made. I hope you received the chemo drug too. Interestingly, my doc said some docs use up to 20 times the dose of that that he would use with a surgery/dilation, so truly dosages there are all over the map.

    I've been told by both my ENT and my rheumy that stenosis seems to be its own beast that doesn't track disease activity, so even though your inflammatory markers are completely normal, you could still be developing stenosis. They are not sure why that is. To the extent that you have WG it needs to be treated, of course, but the fact that you are not on an immunosuppressant right now is likely not affecting your overall recurrance of stenosis very much.

    And by the way, that pred your doc may think is safer than immunosuppressants basically destroyed my bones and I'm 45 years old and not even perimenopausal. So it concerns me when docs prescribe pred (as I was prescribed for five years because the thinking was that I had asthma) but don't want to prescribe the other 'engine' a chemo-type immmunosuppressant. WG doesn't go into remission with pred alone, but can with an immunosuppressant, depending on how severe your case is.

  10. #10
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Linda, not every hospital is great at treating every disease. UC Davis is a fine hospital, but I don't know of any Wegs specialists there. For awhile I was treated at Mayo Arizona--excellent hospital of course-- but the Arizona campus doesn't specialize in Wegs the way Mayo Rochester does. My doc was in over his head and it cost me time, money and lots of damage. Many people don't know that different hospitals specialize in different areas. Cancer treatment is a good example. I know people whose cancer can only be treated by one hospital in the US.

    I'm also shocked to hear a supposed specialist say "You don't have Wegs anymore." It's definitely good to be cautious about using drugs unless you need them, but my advice is to hear it from a true Wegs specialist.

Page 1 of 2 12 LastLast

Tags for this Thread

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
  •