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Thread: So frustruated- negative biospy

  1. #11
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    Quote Originally Posted by annekat View Post
    What everyone says is right, but I was lucky enough to get a positive result on my nasal biopsy. So I think they are worth doing, especially if that is your only obvious area of involvement. If mine had been negative, they could have done a lung biopsy, which is a much bigger deal, and I'm glad to have been spared that. Of course, I had a saddle nose, too, so they could have just concluded by that and my other symptoms, plus the result of my lung CT scan, that I had WG. But I was not being seen by any real WG specialists; when you go to Penn, the one you will see will probably be able to come to that conclusion. Not that I want you to ohave WG, but if you do, I'd like you to know and be able to get treated ASAP. I'm sorry you have to wait until June 17th. It would be nice if someone could at least prescribe you some prednisone in the meantime. Best of luck!

    Hi Anne, I really praying that they can diagnose me without the biospy. June 17 seems so far away and I'm concerned with this recent symptom of numbness in my right foot/ankle. Been numb for a week and to me anything numb on your body probably isn't good. All of my bloodwork has been sent to Dr. Sreih so maybe he will review it soon and call me in earlier. I have been on 10mg of prednisone since April 12 and that has help so much with the leg & joint pains.

  2. #12
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    Quote Originally Posted by blu4runner View Post
    When you go make sure to mention the clinical trials they do. I was able to get my rituximab infusions FREE for 2 years being in a medical trail. I go back on May 24 for my next visit
    Thanks for the advice! I'm so nervous about the treatment plan. I know these medicines are hard on the body and it scares me that I will be really sick on them. But I know I need to get treatment for this.

  3. #13
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    I think it is very likely, with the caliber of docs you will be seeing at Penn, that they will be able to give you a dx without the positive biopsy. And don't be too nervous about the treatments. For most of us it has been worth putting up with a little discomfort in order to stop our disease progress, get relief from disease symptoms, and avoid the permanent damage that would be caused by not being treated. I'm looking forward to hearing how it goes at Penn. Another thing people have mentioned is that sometimes you can get seen earlier if you call in often and ask if there've been any cancellations. Good luck!
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I think it is very likely, with the caliber of docs you will be seeing at Penn, that they will be able to give you a dx without the positive biopsy. And don't be too nervous about the treatments. For most of us it has been worth putting up with a little discomfort in order to stop our disease progress, get relief from disease symptoms, and avoid the permanent damage that would be caused by not being treated. I'm looking forward to hearing how it goes at Penn. Another thing people have mentioned is that sometimes you can get seen earlier if you call in often and ask if there've been any cancellations. Good luck!


    You are so right!! I need to get effective treatment to stop the progression of this disease. It's the only way. Also, good advice about calling in to see if there are any cancellations. The problem I'm experiencing is when I call I can only get to a central scheduler. Should I just keep calling there or is there another way to get around the scheduler? I'm not actually able to get to a nurse or the doctors reception. I'm sure I'm not the only one going through this. LOL

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    Quote Originally Posted by mich911 View Post
    You are so right!! I need to get effective treatment to stop the progression of this disease. It's the only way. Also, good advice about calling in to see if there are any cancellations. The problem I'm experiencing is when I call I can only get to a central scheduler. Should I just keep calling there or is there another way to get around the scheduler? I'm not actually able to get to a nurse or the doctors reception. I'm sure I'm not the only one going through this. LOL
    I would guess you should just keep calling the central scheduler. If he or she is not receptive to being asked about cancellations, then I guess that's the way it is. I have never actually tried doing this. If you are in really dire shape at some point, I don't know how you'd get that known by the docs except by telling the scheduler. Of course, if things get really bad, you should go to the ER, which would get your current doc's attention and maybe he could talk to the future doc about a consultation or stepping up your appointment. I wish these systems were easier to navigate for someone in real need. Maybe someone else will have some ideas here.
    Anne, dx'ed April 2011

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    Hey Mich,

    You might go to the Vasculitis Foundation website to see if they have a different number for the doc.
    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

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