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Thread: Eastern USA?

  1. #71
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    Nov 2014
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    Philadelphia, PA, USA
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    I am in Yardley, PA just north of Phillie...how about you?

  2. #72
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    XnCelt,
    I'm by Valley Forge. We are practically neighbors.
    Donna

  3. #73
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    I was diagnosed with wegeners last jan29 after having a stroke. While hospitalized at yale they performed a kidney biopsy that showed I was an a positive for 21/2 yrs prior I was diagnosed with everything from gout to sinusitis by several specialist. After my diagnosis of wegeners my rhuemotologist said everything I was suffering from for the last 21/2 yrs was related to wegeners and dr Paul Monach confirmed this for me. Dr Monach also said that wegeners probably formed the clot that caused my stroke supposedly making me the first person that this has happened to. I wonder if anyone else has had a stroke possibly due to wegeners also I feel chronic fatigue any help out there? I go for my third infusion in June and am off of prednisone ( 60mg a day at my biggest dose) I also have chronic pain in my legs on average an 8 out of 10 pain level any feedback would be greatly appreciated


    Sent from my iPhone using Tapatalk

  4. #74
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    Maryland, USA
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    I'm glad they finally diagnosed you properly, before Wegs did even more damage or took your life. When I was first diagnosed (2006) I developed "uncountable" numbers of clots in my legs and lungs that went undiagnosed for a full 3 weeks. It was nothing short of a miracle that none went to my brain or heart and that a massive clot didn't form in my lungs. No one knows how I survived at all. My lungs were still hemorrhaging and I had to go on anticoagulants for the clots. Later we learned that Weggies are ~23% more likely to develop DVTs (clots in the legs).

    To your second question, I've been dealing with Wegs for 9 years (10 years if you count the year of horrific symptoms pre-diagnosis) and have never had a single day without debilitating fatigue, weakness and pain. Not everyone has that once the disease is under control, but many do. I certainly feel better than when the Wegs is highly active, but I don't ever feel anything close to good.

  5. #75
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    I have had strokes since diagnosis. Lots of white spots show up on my MRI because of lots strokes. It is assumed that they are correlated to my WG.
    I too have fatigue, pain and weakness every day. Some are better than others but if I have one fairly good day I can be sure to pay for it right after.
    Disease management is the first priority for me but a close second is taking care of my health. Good diet, as much exercise as I can do and some supplements have helped me do the best that I can I think.

  6. #76
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    Nov 2009
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    Hello Sangye, good to see you. I am glad you are with Dr Monach, my Doc too. As Sangye has said clots are not unexpected with Wegener's. Mine went to my lung and with a hole in my heart was very lucky it did not cause a stroke. We all find a way to embrace our new normal and so will you, it just takes time. Going that long without a diagnosis is embarrassingly normal, so glad you finally found a specialist that took the time to connect the dots.


    I have been off Wegs meds for a while, however fatigue is the one symptom that remains. Some days better than others (Pete). I was also left with a wicked ugly case of neuropathy in lower legs and feet and deal with it daily along with SOB.

    All that being said, you are going to be different than us. We all are. I hope you don't have the fatigue, some don't, I hope your leg pain is short lived and goes away, some does. Some symptoms I have others don't and some others have I
    don't. And yes I put the "wicked" in on purpose.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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