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Thread: Still in diagnosis limbo

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    Exclamation Still in diagnosis limbo

    As you may know, I am a bit skeptical of my diagnosis. Well- now both my immunologists think it IS Wegner's. I had made a decision to go to the ENT and ask about a biopsy - just so I could be more certain. Now I am confused again. He is inclined to think along the lines I was thinking. I am not sick enough to have Wegener's. But…he says some folks do have a very limited version….

    To make things even more confusing, my sinuses are quite clear right now - so he says there will most likely be nothing, or very little, to biopsy, which will still leave me in limbo. So….now he has referred me to a pulmonologist to see about a bronchoscopy. The referral has been sent and they will call me tomorrow to set up an appointment.


    So - once again - I am on hold.

    I must say, they are all good folks and interested. Yesterday I went to the allergist/immunulogist, who thought it was likely that I do have WG, but agreed that I should get a definitive test. At 8:30 this morning the phone rang, waking me up. It is the allergist. "Do I have any problems when I take NSAIDS (aspirin and ibuprofen")". When I told her no - she said "OK - that shoots that theory. I was looking into Samter's Triad - but if you can take NSaids - that is not the problem. Have a good day". So - at least I know she is thinking. She is such a nerd - in the most complimentary sense of that word. She is like a bull dog with a bone about this diagnosis.

    Meanwhile - I continue my wheat-free life at the suggestion of my PCP. Not too bad so far…

    Tune in again in the next 10 minutes. I am sure the diagnosis will change. This pulmonologist will be my 9th doctor!! At this point, I truly do not care. I want a firm diagnosis. If it is WG, I can take the medicine and deal with it. If it is not - then tell me what it IS, and I can deal with that too. I JUST WANT TO KNOW FOR SURE!!!! GRRRRRRR!
    Last edited by BookNut; 03-14-2013 at 11:37 AM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Be patient...it takes time to get a solid diagnosis & a good team...unless you do it like I did...and you really don't want to go there!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi book nut! I have just been given a tentative diagnosis of WG because of granulomas biopsied in my lung. My doc also says I'm not "sick" enough. I have rhinitis with what felt like sinus pain all last year, my hearing was muffled and I had to get tubes. Then they discovered a nodule in my lung. I had a swollen salivary gland removed, that was cancer and unrelated so they biopsied the nodule and found granulomas. Currently my sample is at Stanford Medical Center for a definitive diagnosis but I have started prednisone. I can't start my cytoxan until after radiation for the cancer. I'm not feeling any better yet, still coughing til I can't breathe. But, I hope after the cytoxan round, ill be good for a long time.
    i hope they give you a final answer soon. I had my PCP, ENT, pulmonologist, rheumatologist, oncologist, ophthalmologist and saw a neurologist in the ER because the left eyebrow sank temporarily. It's been a short (to some) but long haul to me.
    i also have one pupil smaller than the other. Not sure if that's related!!!

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    I understand how you feel... my doctors had no clue what was causing everything until I was finally diagnosed with WG. At least they think that's what it is for you. It sounds like you have good doctors working around the clock to help. Hopefully they have a definitive answer for you soon, so you can start treatment and start to feel better soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    I'm getting tired of this "not sick enough to have Wegener's" attitude. I was not sick enough to have Wegener's for 2.5 years, and then the s#*t really hit the fan! That could happen to you, too, though I hope it doesn't!
    Anne, dx'ed April 2011

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    Not sick enough to have WG or the one that friends do - you don't look sick .....arrghh

    A girl at work is in the process of trying to get a diagnosis - possible Myathenis Gravis.
    She has been having some shaking episodes at work and has been sent home many times because she is just too tired.
    At one stage when her legs were aching, I said, I know how you feel and told her to rest up.

    Another lady at work said to me - but you're not sick anymore, aren't you better now? You must be, you take medication.
    My daughter (who works with me) had to bite her tongue and said NO, she's not better - there is no cure.



    It may take a while, but at least they are being thorough and not discounting it.
    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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    "Are you better now?".... I have to answer that one when talking to bill collectors about why I fell behind on my payments. Everyone wants to hear that you are better. Maybe you are, but if you say that, or if you look and seem better to people, that makes them think you are now better forever, and there is no longer any reason you should have difficulty with anything!
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I'm getting tired of this "not sick enough to have Wegener's" attitude. I was not sick enough to have Wegener's for 2.5 years, and then the s#*t really hit the fan! That could happen to you, too, though I hope it doesn't!
    It is frustrating to hear that. In my case, I am afraid it is my fault. I have what some would call a "relentlessly" sunny view of things, and perhaps that has contributed to this long, drawn-out diagnosis. I give me doctors credit - as they have been the ones pushing me to make follow up appts. I had just made up my mind that I have chronic bronchitis and that I just need to make the best of it. But, looking back, I might have made too little of the three bad episodes I've had, and am perhaps concentrating too much on how good I feel at the moment. I guess someone that was in the hospital getting 125mg of prednisone via injection 5 times a day, was probably in pretty bad shape. The thing now is that my sinuses have totally cleared up, and it is only the lungs that are an issue. I am not at all short of breath. There is just a constant wheeze that sounds like a sad accordion, accompanied by the sound of rattly congestion - but is only audible upon deep exhalation. My hoarsness is gone, my sense of smell is back, and I can carry a tune again. In my mind, I am doing very well. To the doctors' credit - they don't seem satisfied with an asthma/Chronic bronchitis diagnosis. My husband, who is a severe asthmatic, is also beside himself. He insists that I breathe out deeply after I use one of my asthma meds, so he can hear. Of course, the ever-present wheeze is still there. He says that does not happen to him. His wheeze will often come back in a short amount of time - but his meds WILL clear it up for a little while. Not so for me. But again....it does not interfere with my life, so I am perfectly content to go on as is....unless it truly IS wegeners.

    No matter what happens - I will be SO grateful for all the input from everyone on this forum. What an amazing group of people. Even if I am proven to only have "plain old, garden variety" chronic bronchitis, I will continue to monitor this forum so I can keep up with how everyone is doing!!
    Last edited by BookNut; 03-15-2013 at 03:37 AM.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Quote Originally Posted by Dirty Don View Post
    Be patient...it takes time to get a solid diagnosis & a good team...unless you do it like I did...and you really don't want to go there!
    Well - at least I have a good team. I just want things to be settled so i can get on with dealing with whatever I need to deal with. Sigh.... Thanks as always for the support!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Quote Originally Posted by NikkiNicole View Post
    i hope they give you a final answer soon. I had my PCP, ENT, pulmonologist, rheumatologist, oncologist, ophthalmologist and saw a neurologist in the ER because the left eyebrow sank temporarily. It's been a short (to some) but long haul to me.
    i also have one pupil smaller than the other. Not sure if that's related!!!
    What a time you are having! I hope you will soon be on the upswing. I also hope you don't mind my making a little joke. Believe me, I have every sympathy for your very challenging situation. But I just had to chuckle when I read about your "left eyebrow" (so glad THAT was only temporary!!). The reason I chuckled was because I just got off the phone with my PCP where I told her that I now have so many specialists that I expect any day to be referred to a "left-eyebrow specialist"! And don't I hang up, go on here to re-read the latest responses, and find someone with a left eyebrow issue!! What a disease. Weggies are nothing if not unique! Keep posting and reading. There is SO much expertise and empathy on this board!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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