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  1. Re: Happy New Year to all, just a bit late!!💜

    Hi Jaha, Et al

    Happy and Healthy New Year. Welcome 2019!

    Susan
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    Sticky: Re: How to know when you're having a flare

    Hi Kwnorton,

    Did the Drs say that you can have Rituxan since you've had seizures? I do know a few people who have had seizures and the Drs often do not know the cause, but the one thing that...
  3. Thread: Sore Throat

    by ST316
    Replies
    7
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    855

    Re: Sore Throat

    Hi Nikki
    I also had some of the same issues with my throat whether it was sore or difficulty swallowing especially at night.
    1- I now stop eating at least 2 hours before I go to bed
    2 - I found...
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    Poll: Re: Epstein Bar Virus Curiosity

    Yes around 2008 when my daughter got Mono My blood work came back with Epstein Barr
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    Hi Vdub, I haven't been on this sight as long...

    Hi Vdub,

    I haven't been on this sight as long as most, but I do follow it on a daily basis. As glad as I'd like to say you're free of your Weg status, You
    are still ill and you do contribute...
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    I'm so sorry to hear about your most recent...

    I'm so sorry to hear about your most recent health troubles. Regarding attorneys, I believe the courts have attorneys available for people who cannot afford one. I have many friends who have filed...
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    Hi Deb You have a lot of symptoms that resemble...

    Hi Deb
    You have a lot of symptoms that resemble onset of MS have you discussed this with your Drs?
    -Susan
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    I'll be there. Looking forward! -Susan

    I'll be there.

    Looking forward!
    -Susan
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    Hi, I recommend Sarju S. Patel, MD Weill...

    Hi,
    I recommend Sarju S. Patel, MD

    Weill Cornell Eye Associates
    (1305 York Ave, 11th fl - Ophthalmology)
    New York, NY
    646-962-2020

    He specializes in patients with GPA and other vascular...
  10. Replies
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    Hi Sunday the 20th works for me. Depending on...

    Hi
    Sunday the 20th works for me.
    Depending on time I might stay in Boston Saturday and head over to Burlington Sunday
    I'll figure out the logistics when you firm up the date.
    Looking forward!...
  11. Hi, I was just diagnosed this past March, so...

    Hi,

    I was just diagnosed this past March, so I do not have much experience with this yet. But I do know that I was told I needed to see an Ophthalmologist to obtain the necessary testing that...
  12. Thread: Blood Type Poll

    by ST316
    Replies
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    2,302

    Poll: Hi Vdub, Blood type A+ Any other polls I...

    Hi Vdub,

    Blood type A+
    Any other polls I might have missed?
    Do you happen to what the surprising results on facebook are?

    Thank you
    Susan
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    Yes, I can take the Acela train or any Amtrak...

    Yes, I can take the Acela train or any Amtrak train
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    bo

    Hi Gab

    Am certainly close enough to take a day trip to Boston area. Let me know if you plan something, I will try to make the trip.

    -Susan
  15. Thread: Cataracts

    by ST316
    Replies
    9
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    919

    I guess I will look at the bright side, I did not...

    I guess I will look at the bright side, I did not have to wear them until now. I don't see the ophthalmologist until January. No rush to find out why, but am curious. Specialists in this field are...
  16. Thread: Cataracts

    by ST316
    Replies
    9
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    919

    Hi Pete, I was diagnosed in March had Rtx,...

    Hi Pete,

    I was diagnosed in March had Rtx, down to 8mg medrol. My eyesight had been getting progressively worse. I had never worn glasses prior. I'm sure most of my eye dx uvietis, inflamation...
  17. Thread: Nyc

    by ST316
    Replies
    8
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    1,518

    Hi Max That sounds great. I work midtown near...

    Hi Max That sounds great. I work midtown near Bryant Park, But can go up to Columbus Circle if you'll be going to Dr's up there.
    I don't know how to send PM but if you send me one then I can...
  18. Thread: Nyc

    by ST316
    Replies
    8
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    1,518

    Hi JeanMarie I will reach out to Gail and see...

    Hi JeanMarie

    I will reach out to Gail and see if she has any group meetings set up on the calendar, and or, she will at least have my contact information for future mtgs.

    Thank you so much for...
  19. Thread: Nyc

    by ST316
    Replies
    8
    Views
    1,518

    Nyc

    Hi Pete,
    Thank you. I did reach out to them and at this time there are no groups specifically for GPA.
    They did send me some information regarding the disease. I will attend the next conference...
  20. Thread: Nyc

    by ST316
    Replies
    8
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    1,518

    Nyc

    I am new to this elite group and would really like a meetup in NYC if anyone is around town. There doesn't seem to be any support groups in Manhattan at this time.
    I have so many topics that I...
  21. Thread: Intro

    by ST316
    Replies
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    i would like to thank all of you for your very...

    i would like to thank all of you for your very generous responses. I do go to work everyday and have managed to keep myself as active as possible during
    this roller coaster period of this disease. ...
  22. Thread: Intro

    by ST316
    Replies
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    742

    I imagine if I give it a little more time, than I...

    I imagine if I give it a little more time, than I will have other topics to talk about other than what has been going on in the last 7 months.

    Thank you so much for your input.
  23. Thread: Intro

    by ST316
    Replies
    9
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    742

    Intro

    Hello,

    This is my first post.
    i live in NY tri-state area. I've always had allergies and sinus issues since childhood. Was finally planning
    sinus surgery for Dec 2015 to take care of myself...
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