User Tag List

Likes Likes:  0
Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 36

Thread: New to site. Will see rhematologist in July.

  1. #21
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    I agree, I have been assured by PCP and Rheumatologist that they would get me in any time.
    Little Sister, thank you for your very important input to this thread, I am sorry for the loss of your sister.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  2. #22
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    It seems the initial appt. with a doc is the one that we really need to push for. We could use a little more help from our existing docs. When I had a severe antibiotic-resistant ear infection (not knowing it was the beginning of Wegs), I needed an ENT and could not just call up and get one in a reasonable length of time, even though I had some sort of referral from my PA. But I had been to an ER and the doc there wrote up a detailed referral to one of the best in town, and that got me in within a week or less. That started my relationship with my ENT, who will see me on short notice, but I still didn't get dx'ed until a couple of years later when things got much worse! Not uncommon, unfortunately.
    Anne, dx'ed April 2011

  3. #23
    Join Date
    May 2015
    Posts
    11
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Well. I was hoping to make it to my appointment on July 8th without needing to see my doc in between. But I coughed up mucus with blood this morning. So she had me come in today.
    A lung x-Ray looked good. She told me that if I don't have wegeners she will be surprised. Even though I have been generally healthy beside that (other than everything still being inflamed) she decided to put me back on a long taper of prednisone. Just to get me from here to my July 8th appointment.

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

    Default

    Just so you know, a lung xray doesn't always show enough. In my case, right before my dx, it came back clean, according to the radiologist, and that was the story from my doc, until he took a second look and saw something slightly unusual, he thought, and sent me in for a CT scan. That came back showing numerous small cavitary lesions scattered throughout my lungs, which turned out to be WG. And that's when I was having lots of problems and getting worse by the day with what I'd thought was pneumonia. But between now and July 8th, with just the prednisone, if you seem to be on an even keel, and things don't get worse, you will probably be OK. I say this because it is clear that your choice is to wait for that appointment and not try to get treated with the standard WG meds, other than pred, before that. Keep in mind that WG can escalate quickly, or can go along in "smoldering" mode for quite some time. Blood in the mucus is not a good sign, though. If you could get a CT scan, you'd have a clearer picture of what is going on.
    Last edited by annekat; 06-09-2015 at 08:54 AM.
    Anne, dx'ed April 2011

  5. #25
    Join Date
    May 2015
    Posts
    11
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I just had a thought. Back in October/November of 2013 I had a bad bad cold, suspected pneumonia. I had a chest x-Ray which looked clear.
    But then I had a twisted ovarian cyst and they did a ct scan to find it and it showed pneumonia in my lower lobes.

    Maybe I should have my dr review that ct...

    i mean that was quite a while back but maybe being that my X-ray was clear and ct was not it is worth a 2nd look.

  6. #26
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by 3lazycats View Post
    I just had a thought. Back in October/November of 2013 I had a bad bad cold, suspected pneumonia. I had a chest x-Ray which looked clear.
    But then I had a twisted ovarian cyst and they did a ct scan to find it and it showed pneumonia in my lower lobes.

    Maybe I should have my dr review that ct...

    i mean that was quite a while back but maybe being that my X-ray was clear and ct was not it is worth a 2nd look.
    That's an interesting idea, even though it was awhile back. If WG has been smoldering since then, it could show something, I would think. Although in my case, the smoldering took place in my sinus area, and when it went to my lungs, it stopped smoldering and escalated. Every case is a little different. Also, the pneumonia you had could have been a trigger for WG.
    Anne, dx'ed April 2011

  7. #27
    Join Date
    May 2015
    Posts
    11
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    So. I had my appointment on July 8th with a rheumatologist. She assured me that wegeners doesn't appear to be genetic, and said I don't think you have that.
    She ran some blood tests anyway, testing for wegeners, rheumatoid arthritis, and lupus. The tests have to get sent to mayo so they will take a few weeks for me to have the results.

    The day I saw her also happened to be the day of my last dose of a tapered dosing of prednisone. (And my last dose was 10mg).

    This time I REALLY noticed a difference taking prednisone. I felt nearly normal for the whole course. But once I went off of it WOW!
    Day one off of it my throat felt swollen. Day two I was so extremely dizzy that I didn't leave my bed for half the day and then when I did (to take my kids to the county fair) I had chest symptoms and ache.
    Day three everything seemed like it swelled back up (inflammation). Especially my nose. Day four...snot factory back up and producing.
    Day five major chest pain, so bad that I dreamt about it and dreamt about things like smog and things that make it hard to breathe. Day seven a mouth ulcer and day eight a second mouth ulcer.

    I feel like a mess. The worst is the chest pain. I just feel congested but it also hurts. And I want to call my regular doc so bad to explain all this to her but at the same time I don't want to go on unneseccary meds...so I have been trying to wait it out for the test results. But it really feels like I functioned so much better on the prednisone.

    I dont know what to do but I can't keep on like this. It feels like it is work to just breathe (and like I mentioned in previous posts, chest x-rays have been normal).

    What is wrong with me?

  8. #28
    Join Date
    Jan 2015
    Posts
    33
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Interesting. No sure why they need to send the tests to Mayo. My Rheumy was able to tell me immediately from my blood work that I was ANCA positive.

    That being said, I started with sinus/ear/throat symptoms in May-June timeframe. My family doc kept treating me (with antibiotics) for sinusitis. Sent me for sinus and chest x-rays. Nothing. Finally, by August I was fed up and scheduled an appt with an ENT who right then suspected WG and referred me to a local Rheumy.

    Mind you, by now, my ears are so full of fluid I can't hear, my subglottic stenosis is so bad I can barely breathe, and I've been suffering horrible sinus headaches from the perpetual sinus pressure. Interestingly enough the torrents of mucus from my nose only had small amounts of blood. Had some nose bleeds but none as some others have described. The stenosis was the most terrifying aspect. Walking. talking, and breathing all at the same time was virtually impossible. Couldn't sleep at night because my throat would close up from the stenosis. HORRIBLE! I finally get a call from the Rheumy's office to schedule an appointment. The first available they had was 5 December. More than three months away. My response was, "ARE YOU SERIOUS"?! I'm suffocating and deaf and that's the earliest you can see me? I finally found an old retiring Rheumy who was able to see me in September. He put me on a treatment plan that was completely outdated and useless. Suffered that for a month before contacting the Cleveland Clinic.

    Moral of my story...don't wait for them. Move mountains if you have to to get a diagnosis as quickly as possible.

  9. #29
    Join Date
    Sep 2014
    Location
    League City Texas
    Posts
    141
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Don't sit around in misery waiting. Call your doctor and explain what is going on with you. It sure sounds like WG.
    Karen; dx'ed April 2014

  10. #30
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    It sure sounds like SOMETHING, if not WG. They need to get to the bottom of it. Call your doc and tell him everything, and don't worry about going on meds if they will help you breathe. It sounds like going back on prednisone, for starters, would be a good plan, and if you'd been on it awhile, suddenly stopping at 10mg. could easily cause withdrawal symptoms. It might be unclear whether some of the symptoms were from that or were from an actual disease. In any case, not being able to breathe is unacceptable. Even though your chest xrays have looked OK, maybe you should see a pulmonologist, and get a CT scan, which would show more. There could also be allergies involved. We are not doctors, and I don't know what is wrong with the medical profession today that they will just dismiss someone, thinking they don't have a certain disease, without continuing to pursue the answers.
    Anne, dx'ed April 2011

Page 3 of 4 FirstFirst 1234 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
  •