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Thread: Vancouver, BC, Canada?

  1. #81
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    I live in Surrey BC. Is there anyone in my area? Would love to chat

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  3. #82
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    Hi Susan, I'm in Ladner and replied to your pm. Whereabouts in surrey are you? A close friend of mine is in south surrey. I'm away right now and will be in touch in more detail when I'm able. In the meantime, please ask for a referral to a Vasculitis doc. There are some great ones in Vancouver--Dr. Natasha Dehghan runs a Vasculitis clinic at Mary pack Arthritis centre after doing a fellowship in Vasculitis. I believe she also has a private practice. i have seen her on occasion, but my regular rheumatologist, Dr. Kur is also good and starting me on rituximab next week. There's also a really good doc in New West who has helped members of the support group. (There's a local support group through the Vasculitis foundation of Canada. I'm not sure how active it is as I haven't heard from them in some time.) His name is escaping me but if you Google rheumatologists or wegeners docs in new west, he's the guy with all the amazing recommendations. Many local weggies credit him with saving their lives. If you're not yet being treated, consider it urgent to get to a good wegs doctor. I will be in touch again soon. Hope you're doing okay. I don't know much about your disease or history yet but query whether COPD could have been a misdiagnosis when it was actually wegeners all along?

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  5. #83
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    Everything Lisa said, I second.
    Great advice.
    Great info on docs.
    Great lady.
    With someone like that in your neighbourhood Susan, you will do great.
    This group (on here) saved my life by forcing me to look for a Vasculitis specialist. I was sick and tired and it seemed like an insurmountable task at the time, but I did, and it was the best thing I ever did. The best advice I ever got. The best advice I ever followed.
    This one single piece of advice was the most important and valuable advice I ever got.

    Best of luck.
    It's always great when you have other Weggies backing you up.

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  7. #84
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    Thanks, Marta! I have a ton of admiration for you as well. I'm sorry I've been AWOL for so long. Phil's passing made this a difficult place for me to be for a while, and then Life just got crazy and I figured I'd hear any major news on fb. I now realize I need more than the major news. I also feel like I should support new members like you all supported me. So I'm glad Susan reached out and that other members let me know she needed a local contact. It's nice to be back here. I'll have to catch up. Maybe I'll use my infusion time on Tuesday to read all the recent posts and threads.

    Jolanta, Susan, anyone else in the Lower Mainland BC area: Woukd you be interested in meeting up for an informal support group/chat at some point this fall? Just coffee (or wine) and visiting with others going through similar stuff would be awesome. I know it can be tricky to find a time at which everyone who wants to come feels well enough to make it, at the same time. I've often wished for a local friend who really gets it. I am fortunate to have an amazing bff who deals with navigating the world with very little vision (legally blind but has a fraction of vision and compensates for what's missing so most would never know). She is hugely empathetic and understanding, and gets it as much as anyone possibly can, other than someone going through the same (or almost the same; every Weggie seems to have different symptoms and story, but we're similar in the inconsistencies as well). Anyways, let me know. This coming week I'm starting RTX while my kids start school. Maybe mid-September we can get together a small group of locals. I can ask the other mom I know in Ladner if she's interested as well. I thought I'd post here so anyone else looking for a group would find us.

    There is a local chapter of the vasculitis foundation canada but I've heard nothing from them for many months. I'm afraid that maybe the woman who runs it and plans the meetings may not be feeling well. If I do get an email or invite, I'll share it here. If they're active I would imagine they'd plan something in the Fall.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  9. #85
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    Hello

    I am very interested in meeting up for an informal support group in the fall. I live in Surrey near Gateway Sky train station and live in a Co-op. We have a hall here we can use or even my small place or a restaurant. Meeting others with this will really help and I won't feel so alone. Looking forward to it and hope others join us

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  11. #86
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    Default Re: Vancouver, BC, Canada?

    Hi Lisa, Happy New Year to you and everyone else here on the site. I'm been out of touch for a while just trying to deal with dr's etc. I am still looking for a support group here in the Surrey/Vancouver area. If anyone knows of someone running a group please do let me know. I got to meet Dr. Natasha Dehghan and she was amazing, but she wants me to continue seeing the rheumatologist in Surrey that I saw three months ago. So kind of back to square one looking for support. Still would love to meet up with you Lisa when the time is right for you.
    Finger's crossed I can find a support group soon and be able to move forward.

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  13. #87
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    Default Re: Vancouver, BC, Canada?

    Quote Originally Posted by Susan55 View Post
    Hi Lisa, Happy New Year to you and everyone else here on the site. I'm been out of touch for a while just trying to deal with dr's etc. I am still looking for a support group here in the Surrey/Vancouver area. If anyone knows of someone running a group please do let me know. I got to meet Dr. Natasha Dehghan and she was amazing, but she wants me to continue seeing the rheumatologist in Surrey that I saw three months ago. So kind of back to square one looking for support. Still would love to meet up with you Lisa when the time is right for you.
    Finger's crossed I can find a support group soon and be able to move forward.
    Hey Sue,

    I didn't get the private message you said you sent on here. But I'm curious. Why does Dr. Dehgan want you to stay with your original rheumatologist? Is it because your diagnosis is not verified by a biopsy? I don't get it. If she was awesome why didn't she keep you as a patient, especially if she is taking new patients. I'm confused.

    I'll text you back my email address and we can talk there since I'm not getting anything on this end on the forum.

    Take care sister. We'll chat soon.

  14. #88
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    Default Re: Vancouver, BC, Canada?

    Hello
    Just got back from seeing the rheumy is surrey and she is NOT happy I saw Dr. Dehgan in Vancouver. she told me not to see her anymore and to stay with Dr. Dehgan as too many doctor's now wanting to do different treatments. Dr. Dehgan didn't say why to go back to the Dr. in Surrey, she just said "she's your rheumy so stay with her" and now the dr in Surrey is telling me to go back to Dr. Dehgan and let her diagnose me OH BOY..not good. I don't see Dr. Dehgan until July to go see her for all the blood work she ordered in December. So I'm not on any medications now and no doctor.
    Not sure why the heck your not getting my private messages on here. I checked my sent folder and it says I sent both you and Lisa a msg, maybe my setting? not sure. I will try to msg you again.
    sue

  15. #89
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    Default Re: Vancouver, BC, Canada?

    Send you an private email

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