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Thread: Hello from The San Francisco Peninsula

  1. #11
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    Welcome
    Glad not the big c : sorry its the weggies gang you've joined
    But : help support & love you'll get from here now on
    Good luck x


    Sent from my iPad using Tapatalk

  2. #12
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    Thank your all for chiming in. It's interesting to hear about all the mis-diagnosis (Last night I was looking at the Vasculitus Foundation video "testimonials" and its frightening how long some diagnosis took, and how it endangered the patients).

    I am indeed fortunate - the entire misdiagnosis episode was about a week and a half, and the team at PAMF is very capable. When added to my ability to study online, I feel like a trip to Cleveland isn't needed! When compared to stories of multi-year misdiagnosis, kidney failures, near-death experiences, and related horrors I feel like a kid faking a cold.

    Good luck to you all - thanks again for the words of welcome, and feel free to contact me if there's any way I can be of help.

    Regards,

    Steve

  3. #13
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    Hi Steve,
    I am down near Death Valley. Sorry for that scare. I just had one myself. My mammo came up with
    a tumor. So did the compression mammogram. Waited for Anthem to approve an MRI, but it didn't. Then
    I had a nuclear test....and the tumor was gone. The surgeon and radiologist were so sure it was cancer but it
    disappeared before the biopsy. I am sure it was some sort of Wegs lesion. Wegs is one crazy ride.

  4. #14
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    Glad to have you with us- sorry it had to be under these circumstances . Still, I am one of the old guard. My illness was not taken seriously 36 years ago and I was thought to have 'sinus infection' . I can't say which is worse - to be upgraded to Wg (like me) or down graded from cancer (like you). I'm sorry you went through that , it must have been very scary.
    Still you might find yourself the luckiest of the un-lucky.
    This is not to diminish what you have been through and what you face but to suggest to you to be thankful for a fate that has not been so kind to some.
    I'm looking forward to hearing more about how you got here and how you move forward.
    Thanks for joining us.

    BarbW, you have certainly been through the wringer too. I'm glad you got a 'better' diagnosis too.

  5. #15
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    Welcome to the noob. I think the number here that got a correct and early diagnosis of Wegs would be the minority. I don't recall that any one here had ever heard of it or knew what it was when they were given the diagnosis, but that is part of special commonality that helps bind us together, having a strange, unpredictable, highly variable, rare disease.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #16
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    Quote Originally Posted by drz View Post
    Welcome to the noob. I think the number here that got a correct and early diagnosis of Wegs would be the minority. I don't recall that any one here had ever heard of it or knew what it was when they were given the diagnosis, but that is part of special commonality that helps bind us together, having a strange, unpredictable, highly variable, rare disease.
    The only reason I'd ever heard of WG was because I have a habit of googling any medical symptoms a lot, be they backaches, joint pain, or whatever. So I was having a lot of trouble with my ears and getting my eustachian tubes to open up when they should, after a big, atypical ear infection. So I googled around about e-tube dysfunction, and there was Wegener's Granulomatosis. But no, I couldn't have that, that's too big a word. I must just have a lot of allergies and recurring sinus infections as a result, which also block the e-tubes, like the docs say. Well, when things came to a head, and my lungs got involved..... the rest is history. At least there was the small comfort of knowing that I'd read about this disease before and could go back and check out what I'd read. And luckily, I stumbled upon the forum before I was even officially dx'ed.... way better than randomly surfing the web.
    Anne, dx'ed April 2011

  7. #17
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    Hi Steve I'm a new by to this forum but was diagnosed with WG in 1979. My dr of 34 years recently retired and I am in search a a new doctor. I'm in central California. May I ask who you are being treated by and what is their background? I'm glad you are doing much better. A positive attitude is what I live by

  8. #18
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    daystarr,

    My regular medical facility is the Palo Alto Medical Foundation, and my rheumatologist is Dr Andrew Rozelle. He has a handful of Wegener's patients, and is pretty well up on the disease. The overall team is very good, and they went to bat for me to fight insurance for Rituxan - honoring my insistent, persistent demands. He has been willing to spend a lot of time with me, answers emails at almost any time of day (incl. weekends). He listens, and does not dismiss the opinions I've developed from my own research into the disease. In general PAMF has managed to schedule appts almost immediately, lab tests are generally same-day, with results the following day. CT, PET, and other scans take a few days to schedule, but no horror stories.

    I think your question brings up a very interesting issue regarding this type of disease. There was a time, when one was diagnosed with a rare disease, that you searched the world for "That guy" (or that woman) who was the leading expert... and then you traveled to the Mayo clinic, or Cleveland, or perhaps Paris. I think that time is pretty much over. Any knowledgeable, interested specialist, in any facility, can provide state-of-the-art care... if they care to do so, and are willing to educate themselves about the disease from the incredible amount of available information. The horror stories you hear on the vasculitis web site - or this one - tend to be from original misdiagnosis which went uncorrected for a long time, from the occasional Dr. who doesn't care about the patient or the disease, and from insurance denials or predilection for cheaper drug solutions.

    So - I can certainly recommend PAMF and Dr. Rozelle, assuming they are within your provider network options. As you are, I'm sure, aware, there's also a Vasculitus clinic at UCSF, and although I have no details they're undoubtedly a good option.

    Good luck finding the right Doctor. Since I'm quite new to all of this, there are probably others in the area who could give you additional (and perhaps better) recommendations.

    -Steve

  9. #19
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    Thanks for the input. I do agree with you to an extent when it comes to treatment as in medication. Finding the dr that will listen and treat accordingly to the ups and downs and forever changing symptoms. But when it comes to cutting in my airway and the possibility of losing my vocal cords or ending up with a tracheotomy I'm going to search out a surgeon who has done many many many wegeners patients and has had great success. The less trama to that unforgiving spot is the most important thing. I do have good doctors but there are not any surgeons in this area that I'm willing to let them do their first wegeners dilation on me. So if I travel onetime or a few times and get the best possible results it will be worth it for me.

  10. #20
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    daystarr,

    I guess, as a "newbie" to this disease, I'm only thinking in terms of drug therapy. Of course there are other considerations - and a problem with your esophagus is a major one. I have no experience with anyone involved with ENT surgery at PAMF or Stanford. Good luck finding the right people.

    -Steve

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