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  1. Thread: new

    by germaine
    Replies
    106
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    7,980

    Hi Skipper, I sent you a long reply to your...

    Hi Skipper, I sent you a long reply to your enquiry about doctors and contacts in the Toronto area. I hope you got it. Germaine
  2. It is wonderful to have real people to talk to...

    It is wonderful to have real people to talk to and share with. The internet is good, but really seeing people and sharing snacks and stories is so muc better. The difficulty it getting the message...
  3. Replies
    88
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    17,810

    Hi Jolanta, I haven't been on this group in...

    Hi Jolanta, I haven't been on this group in ages, and it is nice to see the progress everyone seems to be making and nice to see your picture. We now have a support group in Nanaimo. The Next one...
  4. Is Sandy Point Idaho anywhere close to where you...

    Is Sandy Point Idaho anywhere close to where you are? If so I well send a message to someone there, she isn't firmly diagnosed yet, I don't think. Germaine
  5. Hi Kami, I just wrote an extensive email to...

    Hi Kami, I just wrote an extensive email to Andrew about our group here on the west coast of Canada. It is truly wonderful having that face to face contact. Good luck with your group. If you...
  6. Replies
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    3,025

    Hi Sangye. i have been put on actonal (generic...

    Hi Sangye. i have been put on actonal (generic version), Fosamax gave me hives. I had a bone scan and it showed amber for my hips, but the rest of my bones were OK. I feel really mixed about taking...
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    Hi Andrew, A fellow Weggie and I (which I met at...

    Hi Andrew, A fellow Weggie and I (which I met at Long Beach) are working at starting a group for Vancouver Island. It will be on October 16th at 2 pm in Nanaimo. If anyone is interested in attending...
  8. Oooohhh!, Not too reassuring, I get to join the...

    Oooohhh!, Not too reassuring, I get to join the cataract surgery club on November 16th. My Opthamologist has a really good reputation, to I will trust all will be well until I have a problem. Hope...
  9. Replies
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    Hi Sangye, I want to thank you for your...

    Hi Sangye, I want to thank you for your recommendation to get of the chemo. I am finally on Methatrexate. Your's and Jacks strong recommendations made me really keep asking to get off it, but it...
  10. Replies
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    33,385

    I was at the Long Beach Symposium. Great...

    I was at the Long Beach Symposium. Great experience. They gave us a four page handout about rituximab which basicly seems to consider it a superior treatment to the Cyclo and less harmful to your...
  11. Thread: Cytoxan

    by germaine
    Replies
    207
    Views
    14,620

    Hi, I've been on cytoxan for too long. I am...

    Hi, I've been on cytoxan for too long. I am currently on only 25 mg per day. Dr wants to try me on alternative in September. 8mg of pred. I am doing very, very well as far as general welbeing and...
  12. Replies
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    Mount Sinai Hospital in Toronto is doing some...

    Mount Sinai Hospital in Toronto is doing some research into possible genetic influences on WG. I signed up last year, but we don't really hear anything. The researcher was having problems finding...
  13. Replies
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    Hi, I don't have any equipment that records...

    Hi, I don't have any equipment that records anything, but will try to get some material which I will try to pass along here if it seems suitable. I will try to take a few pictures, but then I always...
  14. Poll: I also think it would be a good idea to put this...

    I also think it would be a good idea to put this in a more visible place, so everyone sees it. I think the poll is a good idea. Germaine
  15. Poll: I think I need a definition. Do we mean...

    I think I need a definition. Do we mean remission with NO MEDICATION, or with all our indicators looking good and generally feeling not too bad, and not on actual killer doses of medication? ...
  16. Replies
    610
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    42,118

    Hi Moyan, I understand there is a problem with...

    Hi Moyan, I understand there is a problem with the contacts I sent you. I am trying to get through to someone there myself, but have not had a reply. I will persist. I have had a great deal of...
  17. Replies
    610
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    42,118

    I had a bout of dizziness (left benign positional...

    I had a bout of dizziness (left benign positional vertigo) - it sounds like you might have it on the right side. You can check it up on the internet which illustrates what I think was called the...
  18. Replies
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    4,705

    Long Beach symposium

    How many of us are going to the syposium in Long Beach? I have registered. Maybe I will see some of you there. Germaine
  19. Replies
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    17,810

    My last note seemed to disappear, so here it is...

    My last note seemed to disappear, so here it is again maybe. The general contact for the support group in Vancouver is WG Support Metro Vancouver wegener'[email protected] I also have personal email...
  20. Replies
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    4,332

    I get pain in various of those areas. I find...

    I get pain in various of those areas. I find regular walking as far as comfortable and some physiotherapy has helped a lot. I also took Sangye's advice about being sure to get enough rest to do the...
  21. Replies
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    4,332

    There is a Wegener's support group in Vancouver...

    There is a Wegener's support group in Vancouver with a number of members. I am not sure which doctor's they are seeing, but they should be able to help you. If you can't find that group, let me...
  22. Replies
    86
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    5,648

    I am pretty happy with the system we have in...

    I am pretty happy with the system we have in Canada. There is gripping about it at various times, but when I think of all the tests and specialists I've seen since I've gotten sick, all covered for...
  23. Thread: Cytoxan

    by germaine
    Replies
    207
    Views
    14,620

    Hi Mandy, I did experience thinning, but not...

    Hi Mandy, I did experience thinning, but not REAL bald spots. I did get a little innovative trying to comb it in ways that didn't make the thinning quite so noticeable. Oddly enough it occured on...
  24. Replies
    178
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    58,581

    Sticky: Thanks for the feedback. I knew I could count on...

    Thanks for the feedback. I knew I could count on you. In Canada an interist is definitely a specialist in internal medicine. We also have interns. I guess it is just a labelling thing. I have...
  25. Replies
    178
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    58,581

    Sticky: I was happily reducing my medication and was down...

    I was happily reducing my medication and was down to only 6 pred and nothing else, and guess what - no surprise except perhaps for my internest. He has now recommended a rheumatologist. What is the...
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