User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: First mention of Wegener's yesterday: uncertain in Ohio

  1. #1
    Join Date
    Dec 2014
    Posts
    10
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default First mention of Wegener's yesterday: uncertain in Ohio

    Hi everyone,

    I've been feeling poorly since the beginning of October (VERY tired, missing work, lower right back pain, frequent headaches, nose bleeds, huge and gross crusties in my left nostril). The crusties and nose bleeds have been going on for about a year, the lower right back pain since July and headaches gradually getting more frequent with time. I've been to a few different internists with fatigue complaints- I've thought the crusties were super gross but thought maybe it was just uber allergies. Yesterday I had my regular checkup, ready with a page full of symptoms. I wasn't going to go home without some further investigation- I'm convinced my suffering is not normal and I think it goes beyond my diagnosed depression. My regular doc found blood in my nostril so she sent me to the ENT specialist and I'm having a sleep study next week (I feel the need for sleep every chance I can get). The ENT had this troubled look on her face as she's digging out the nose crust, saying "it almost looks like..." I said "What?" getting anxious. She replied "Wegeners. Not to say you have it at all, but you have a lot of crusting. Wegeners is an autoimmune disease" to which I replied "Oh, I have an autoimmune disease- Scleroderma of the skin." This caused her to be tempted to give me a blood test right away. She decided against it, and I'll see her in a month for follow up. I'm upset now that I didn't request the blood test. A month wondering about this thing that some resources say 5 months untreated and you're a goner. That would be in February and my next appt. is January. I've called the doc but she's only there one day a week. I was told a nurse would call me back- it's been 8 hours. I called my primary doc and left a message requesting the blood test. No response or order yet. Should I be worried? Should I keep calling until I get somewhere? Or should I wait a month? I'm in pain (head, arms, lower right back, sinuses, weakness) but not to the point of what I've been reading from others- I haven't been hospitalized or to the point of crying and unable to sleep. But it's enough to worry with the chronic pain and epic nose monsters. I thought I had MS (my aunt has it) but when I told a doc in October she looked at me like I was being a hypochondriac. She cared, I know, but it was close enough to a scoff- I'd be grateful to be diagnosed with "something" so I can start getting it treated. Thanks for caring and reading this!

  2. #2
    Join Date
    Apr 2010
    Posts
    853
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome. My story is extremely long (which is a good thing) but I will start at the beginning. All I had was sinus pain and nose bleeds that wouldn't quit or get better after months of treatment with antibiotics. My ENT then took a nose biopsy , right in his office, and in a few days I received a diagnosis of WG.
    If it were me, and I had an ENT suspect WG based on what are already serious symptoms I would definately not wait a month for my next appointment and then tack on the additional time waiting for test results.
    If you do have WG , early diagnosis and treatment is extremely important and you are right to be concerned about waiting that long.

    Since you live in Ohio I can't help but mention that you live in the state with the Mecca of WG treatment- The Cleveland Clinic.
    I myself have traveled there from Washington state. First for a conference on WG and then years later to be seen by Dr Langford for treatment advice.
    If it were possible for you to be seen there you could not be at a better place.
    If that is not an option I would find the best local ENT and get started with testing ASAP to confirm or eliminate WG.

    Getting a diagnosis is the first step towards getting better from the way things have been for you. Don't settle for being sick and delayed appointments.

  3. #3
    Join Date
    Nov 2014
    Location
    Sydney, Australia
    Posts
    34
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    We all experience a variety of symptoms leading to the diagnosis of WG, but I agree that the sooner you have an evaluation, the better, for your own peace of mind, and for controls to take effect. And if it is not WG, then you will have it identified for whatever may be the cause.

  4. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,211
    Post Thanks / Like
    Mentioned
    15 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hello KD,

    Glad you found us, but sorry you needed to. This is good place to get information and support from a great group of folks (most of whom I've never met face to face). Someone is on here 24/7/365. Feel free to ask questions, get advice, or just vent. There are also Vasculitis support groups in Cleveland and Springfield. If you need contact info, just let me know.

    I live on the west side of Columbus and was diagnosed at Ohio State. A little over a year after diagnosis, I found this forum. Most everyone was recommending that I connect with a Wegener's specialist. I now see Dr Alexandra Villa Forte at Cleveland Clinic. She only sees Vasculitis patients. She's very competent, very thorough, and a nice person. She takes the time needed to address your concerns. I see her twice a year. It's a little over two hours each way to get there. I also have a really good PCP at one of the Ohio State satellite offices near my home.

    Where do you live in Ohio? I'm originally from Massillon, but I've lived in the Columbus area for the past four years.

    Good luck, and I hope you feel better soon.
    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

  5. #5
    Join Date
    Dec 2014
    Posts
    10
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for the quick replies everyone, and for the advice. I'll keep poking them about it. I live in a suburb of Cleveland and did go to the Cleveland Clinic for these appointments. Maybe they see so many WG patients that she was concerned she might be just diagnosing willy-nilly left and right. I don't know (can you tell it's close to midnight here? I'm feeling goofy and very tired as usual). I just know something is wrong- it's stressful when you prepare your presentation for your doctor's visit to convince them you are not well. I had some testing done on Halloween and everything was normal except low co2- looking that up pointed to kidney issues but creatinine was normal, so doc said it didn't mean much, something about fasting before your blood test does that. I'm not anemic, Vitamin D is good, white blood cells/red blood cells are normal, absolute neutrophil count is fine (ANC)- I have no idea if this is in any way connected to ANCA but.... normal bloodwork might be making them skeptical. I'll keep you posted on where I get with my prodding. Thanks!!

  6. #6
    Join Date
    Apr 2013
    Location
    San Diego, California
    Posts
    300
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    To be honest, the back pain has me nervous for you. I would even say, since it can take so long to see a specialist, to consider either exaggerating the pain level a bit or waiting for a bloody nose and then going to urgent care etc and then telling them all the symptoms. Might get you seen faster by a regular rheumy, with a referral from UC or ER. Our daughter had a flare that had all her numbers in normal range, with the exception of PR3 and ANCA, except that if you track all those normal numbers were slowly moving in the wrong directions. This is a terrible disease that is highly individualized and can move awfully fast.

  7. #7
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by kdjaxn View Post
    Thanks for the quick replies everyone, and for the advice. I'll keep poking them about it. I live in a suburb of Cleveland and did go to the Cleveland Clinic for these appointments. Maybe they see so many WG patients that she was concerned she might be just diagnosing willy-nilly left and right. I don't know (can you tell it's close to midnight here? I'm feeling goofy and very tired as usual). I just know something is wrong- it's stressful when you prepare your presentation for your doctor's visit to convince them you are not well. I had some testing done on Halloween and everything was normal except low co2- looking that up pointed to kidney issues but creatinine was normal, so doc said it didn't mean much, something about fasting before your blood test does that. I'm not anemic, Vitamin D is good, white blood cells/red blood cells are normal, absolute neutrophil count is fine (ANC)- I have no idea if this is in any way connected to ANCA but.... normal bloodwork might be making them skeptical. I'll keep you posted on where I get with my prodding. Thanks!!
    I do NOT have WG....but I DO have experience with Cleveland Clinic. The vast majority of people on the forum who have been there have had good experiences. HOWEVER...the biggest issue I had with them is the lack of follow through. I spent three months trying to get some tests done. It was a beuraucratic nightmare. The biggest issue was the support staff. They would promise to do something and NEVER. follow through. I always had to call them the day after they promised to get back to me....only to get another promise of action that was not to be fulfilled. Hopefuly your doctor's staff is not like that. BUT...if they have not called you at the promised time....keep calling them back and don't let them put you off. In hind-sight, I SHOULD have contacted the doctor directly via the email system and also let him/her know of the lack of follow through by any of the staff members if that happens to you, But even as I type that I realize that might not do any good. The last email I sent was answered by the secretary....who was one of the legion of incompetent staff. ANYWAY...keep after them!
    Last edited by BookNut; 12-04-2014 at 08:32 PM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  8. #8
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,715
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Kd and welcome to the forum.

    I'm glad that you found it so fast but I'm sorry that a doctor has given you the need to find it

    Being from Australia, I can't give you any information on the doctors over there, but this is why we have this wonderful forum with amazing people to point you in the right direction.

    I hope you can see someone very soon and get a proper diagnosis - however, I hope it is not WG

    Best of luck to you
    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

  9. #9
    Join Date
    Dec 2014
    Posts
    10
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks. At the very least I'm going to ask the ent's receptionist to give her the request message fora blood test so Tuesday she will get it or sooner. The first attempt just for a message got me a promised nurse triage call back that I never received. I'll just tell her to quote me in a message and don't worry about the medical jargon. When I told a doc about the back pain in July he gave me a back exercise worksheet. Didn't feel anything when he pressed on my back. I don't have the greatest posture but I've never had back pain for this long either. Just talking about it helps the anxiety though so thanks.

  10. #10
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    kdjaxon

    I am not the least surprised by the lack of a call back. Keep after them. Somebody needs to clean up procedures at that place.

    As for back pain.... Once you get an answer and know it is safe to do so...try acupuncture. I have had back pain since a fall when I was 18. It has gotten a little worse every year. My PCP sent me for my sinus issues. So far, no luck with that...but I also mentioned the back pain and she worked on that too. After three days I was startled to realize that my back pain was gone. Truly amazing.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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
  •