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Thread: Negative ANCA

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    Default Negative ANCA

    During May, June and July I was having a flare. My Rheumy prescribed RXT infusions in August,nothing unusual here.
    My September blood test my ANCA was 7 then in September and October it was negative, December I was back to 9. Has this happened to anyone else?

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    Unhappy Tracheal Stenosis & Negative ANCA

    Hi There, I'm replying to this thread because of the title caught my eye. It's what I can really relate to. I'm 35, and a single mom of a ten year old. So my life feels like it's been on hold for the past two years. The only recognizable, life-altering symptom I have is the subglottic stenosis...like the subject heading, ANCA tests (2) have come back negative so far...I've been having allergy or cold-like symptoms for a while now...but no pus (or sinus issues beyond hay-fever like severity). I've attributed this to dust allergies as I have been tested for environments things and dust/pollen were culprits in the results.

    In November, the narrowing was so bad that I had to get dilatation just to be able to function (I was at 40% air capacity). No running, walking fast, moving fast...I had the procedure done in December and felt great for a little over a month (some of which was heavily medicated due to post-procedure). Presently, the narrowing is returning.

    I guess I'm just looking to see if anyone else has had these "limited" symptoms of Wegener's? I have yet to be diagnosed for this, and have been referred to a Rheumatologist to either confirm or rule it out... Also, is anyone else struggling with depression due to life being altered (and feeling trapped in their own bodies)?

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    Quote Originally Posted by BrilliantLight View Post
    Hi There, I'm replying to this thread because of the title caught my eye. It's what I can really relate to. I'm 35, and a single mom of a ten year old. So my life feels like it's been on hold for the past two years. The only recognizable, life-altering symptom I have is the subglottic stenosis...like the subject heading, ANCA tests (2) have come back negative so far...I've been having allergy or cold-like symptoms for a while now...but no pus (or sinus issues beyond hay-fever like severity). I've attributed this to dust allergies as I have been tested for environments things and dust/pollen were culprits in the results.

    In November, the narrowing was so bad that I had to get dilatation just to be able to function (I was at 40% air capacity). No running, walking fast, moving fast...I had the procedure done in December and felt great for a little over a month (some of which was heavily medicated due to post-procedure). Presently, the narrowing is returning.

    I guess I'm just looking to see if anyone else has had these "limited" symptoms of Wegener's? I have yet to be diagnosed for this, and have been referred to a Rheumatologist to either confirm or rule it out... Also, is anyone else struggling with depression due to life being altered (and feeling trapped in their own bodies)?
    Yes, these are common things mentioned here by many users. You are not alone!!!

    Welcome
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi brilliantlight, welcome! I also am considered having limited wegs and have a neg anca. My ears are my problem. What I understand is that I am being treated to slow down the potential progress of the disease and prevent further damage to what is bring effected at the moment. Depression played a part in the picture for me especially first year after diagnosis. I tried an antidepressant for a while, but have since stopped.
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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    Hi brilliantlight and welcome to the forum.

    As drz says, your symptoms and the way you feel is very common and if you put a keyword in the search engine bar, you will find a lot of similar stories.
    Also if you go to the New Members threads, you will see that you are not alone.

    It might be an idea to introduce yourself in the new member thread and then others can come alone and offer some advice.
    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

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    BrilliantLight, perhaps, you should find a laryngologist?
    Here is a good video explaining treatments for subglottic stenosis
    http://www.wegeners-granulomatosis.c...-stenosis.html
    Last edited by mrtmeo; 03-01-2015 at 01:59 AM.

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    Thanks jvilner. How did you deal with the depression symptoms? Did they lesson once you found yourself on the road to regaining control?

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    Thanks mishb. I am just getting the hang of navigating this site...feeling a tad overwhelmed by all of this. Really appreciate all of the replies. Will definitely go to the new members area and start off there.

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    Brilliant-- One thing to keep in mind, you can have ongoing Tracheal Stenosis & your wegs is in remission at the same time. As far as depression goes--boy do we have reasons to be depressed! I think a lot of us have it. If its affecting your daily life I would consider a talk with your doctors.

    As far as the up & down Anka--I think that happens a lot too. By itself, with no other symptoms, I'm pretty sure your doc will just watch how you are doing. Hope this helps!!

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    Question as I am very confused now. Been told that I need dilation on esophagus. Barium swallow shows web/ring. I've had swallowing problems for years. No airway problems. Was dxed with WG only years later when had ear problems. Don't know 100% if swallowing is part of WG problem but am being treated accordingly. My question is 1. Anyone had dilation on esophagus not trachea and 2. Should a gastroenterologist or Ent do the procedure? Help!!
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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