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Thread: Vancouver, BC, Canada?

  1. #71
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    Howattzer, welcome to the family.

    I used to be contact with a Monika M from Kelowna. Her number is 250-869-xxxx. (contact me with a private post for the number) I forget if she had a good doc in the area or not. I would try to give her a call and see what she has to say. I know she has had Wegs for well over 12 years. Does your mom live in Vancouver?

    There are others on here from lower mainland and the Island. Jolanta, Pmarsh, Germaine, etc.
    Last edited by vdub; 03-02-2014 at 09:03 AM.
    Phil Berggren, dx 2003

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  3. #72
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    I wish I'd thought to post this sooner. There is a meeting of the Vancouver/BC WG support group this evening in New Westminster. Here is the info:

    june 12 @ 6 pm
    La Spaghetteria Restaurant (private upstairs room)
    232, 6th St
    New Westminster, BC

    There is a Facebook wegeners granulomatosis group with details about the support group. It has 18 members plus family members/caregivers.

    I'm doing my utmost to go tonight! (I don't like to tempt fate by saying any plan is certain, but I INTEND to be there. Anyone else on here who lives in the area, sorry if you weren't aware and I didn't post this sooner. I will tell the group about this forum; I'm sure they know but just in case. I you can make it despite last minute notice I'd love to meet you. And if nobody there minds having their pic posted I'll try to get a group photo to share. Cheers!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  4. #73
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    Have there been any meetings of Lower Mainland folks lately? (The previous post was 6 months ago.) I just got diagnosed on Dec. 19/14 and would love to connect with others in person at some point.

    - Susan

  5. #74
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    Quote Originally Posted by duffybear View Post
    Have there been any meetings of Lower Mainland folks lately? (The previous post was 6 months ago.) I just got diagnosed on Dec. 19/14 and would love to connect with others in person at some point.

    - Susan
    Hi Susan, welcome. Sorry to hear you've got the disease but glad you found the forum, which will give you lots of info and support. I haven't been on here in too long a while but hope to catch up with posts etc when my kids are back in school. I've been in touch with one of the support group leaders here in BC and she said they usually plan something in mid- to late January. I will dig up the group contCt info and post it here for you so you can ask to be added to their list. When I receive details of the event I will also post it here. Whereabouts are you? And who is your WG doctor? I'm in Ladner but I see Dr. Jason Kur in Vancouver. I've also been to Dr. Robert Rothwell in New West, who treats many Of the group's members and seems fantastic. Unfortunately I saw him for my insurance issue (hired by my insurer to do an independent medical evaluation), so can't go to him unless or until I settle the legal matter. If you're looking for an expert he would be a good choice if he's still taking patients. I look forward t getting to know you and hope you're feeling okay.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #75
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    Lisa - Thanks so much for responding so quickly (yay!). As mentioned, I was only diagnosed about 2 weeks ago, and kind of by accident, so I don't seem to have much of a plan at this point (viz. no WG doctor, hard to find a few days before Christmas!). (Long story short - progressively sicker and sicker in Fall 2014 with sinus problem, cough, laryngitis, sinus infection, never got better even after antibiotics and 1 month off work, sudden major joint pain onset, swollen thyroid, gums all swole up, finally saw ENT on Dec. 12 who freaked out over crusting in my trachea, sent me to VGH ER - I live in Vancouver - where I had bronchoscopy 4 hours later, respirologoist saw me Dec. 19 and gave me diagnosis, put me on prednisone (that's all right now), am due to go back to respirologist on Monday Jan. 5. I know I need to hone in on them about who I should see, also - although respirologist described my condition as "mild", do I need other meds? Etc, etc.) Thanks for the names of a couple of rheumatologists here in town - my GP (in her 50s) has never had a patient with this. At this stage, the prednisone has helped with about 90% of my symptoms (thank heavens, I was SO sick), so I'm not feeling too bad right now. I look forward to any updates you have on a get-together!

  7. #76
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    Quote Originally Posted by duffybear View Post
    Lisa - Thanks so much for responding so quickly (yay!). As mentioned, I was only diagnosed about 2 weeks ago, and kind of by accident, so I don't seem to have much of a plan at this point (viz. no WG doctor, hard to find a few days before Christmas!). (Long story short - progressively sicker and sicker in Fall 2014 with sinus problem, cough, laryngitis, sinus infection, never got better even after antibiotics and 1 month off work, sudden major joint pain onset, swollen thyroid, gums all swole up, finally saw ENT on Dec. 12 who freaked out over crusting in my trachea, sent me to VGH ER - I live in Vancouver - where I had bronchoscopy 4 hours later, respirologoist saw me Dec. 19 and gave me diagnosis, put me on prednisone (that's all right now), am due to go back to respirologist on Monday Jan. 5. I know I need to hone in on them about who I should see, also - although respirologist described my condition as "mild", do I need other meds? Etc, etc.) Thanks for the names of a couple of rheumatologists here in town - my GP (in her 50s) has never had a patient with this. At this stage, the prednisone has helped with about 90% of my symptoms (thank heavens, I was SO sick), so I'm not feeling too bad right now. I look forward to any updates you have on a get-together!
    How were you diagnosed? Hopefully someone ordered bloodwork so they ensured your kidneys are ok. Usually you are started on one more drug along with prednisone. The sooner you can get started on an immune suppressing drug and tapering down the prednisone, the better. The respirologist should know who to refer you to. If not ask for the VGH rapid access clinic for autoimmune arthritis.

    There is also a group of ENTs at VGH otolaryngology / head and neck surgery who seem to be the right people to see for upper respiratory WG... Dr. Scott Durham is the one I see, and he was teaching his students about the protocol followed by Dr. Lebovics in New York who seems to be the leading expert. So, although I don't love his people skills, if your doctors don't know who to send you to he might be a good bet. I've also heard of one at St. Paul's who is supposed to be great, and his name is Dr. Amin Javer but apparently there's a long wait list to see him.

    Finally, there is a list on this site and the vasculitis foundation canada site of experts connected with the vasculitis foundation. I'll see if I can find and post it here. The reason I'm giving you all these names and info is that having a doctor or team of doctors experienced with WG is crucial. You're so fortunate that that ENT followed his instinct and you got a quick diagnosis. Now you need someone who really knows what they're doing to treat you and hopefully get you into remission. I had Undiagnosed symptoms for years and am still struggling to get better symptom control, although I'm fortunate that i seem to have 'limited' WG (not affecting my kidneys), and my respiratory issues are under control.

    Keep us posted on your appointment. Maybe we can meet for coffee and chat one day. I'm in vancouver all the time to see my doctors there.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  8. #77
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    Wow, a lot of Weggie Angels on this thread. Moyan was the first Weggie I got to know a little to pass away unexpectedly.

    InformationCanVasc

    Here's the CanVasc page that has some of the most interested Vascie docs in Canada.
    It is with Dr. Pagnoux and Dr. Yacyshyn that we've submitted our survey results (the one we all submitted to and got almost 1000 Weggie replies) as a research paper.... I just saw Dr. Yacyshyn at the ski hill two days ago and she told me that we were denied publication in the Journal of Rheumatology, but they're going to keep trying.

    Best of luck to all in 2015. May this be the year something miraculous happens in terms of awareness, research, findings... or all three.

  9. #78
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    Hi Lisa - I saw the respirologist at VGH on Monday, he prescribed methotrexate (which I will start tomorrow, I'm a little worried about the side effects, but the current dosage is low), as well as some prophylactic anti-fungal for my lungs that is WILDLY expensive. (Being a respirologist, I guess he worries about lung issues - but I need to talk to him - I can't afford $100/week, and that's AFTER insurance has paid their portion). He set me up with the rheumatology department at VGH; my appointment is next week. (I'll send you a private message - I think you have a dog and maybe we could walk the dogs together one day. No point dragging everyone else through our schedules...)

  10. #79
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    I am not being sent to a specialist and live in Surrey BC..going to a rheumys which I don't think they know what they are doing. I shall soon find out how this doctor wants to deal with my treatment on Sept 25/17.

  11. #80
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    Hi duffybear

    I just ready your post and I live in Surrey BC. I am just wondering how it went seeing rheumatology? I see a respirologist for COPD just wonder if I should be calling her to let her know about this new disease GPA. I would love your feedback and to hear about your personal experience if your willing to share..thank you

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