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Type: Posts; User: Momof3

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    I would suggest you get an echocardiogram to...

    I would suggest you get an echocardiogram to evaluate your heart function. If you are having chest pains and shortness of breath with extertion it could indicate your heart is affected. Either from...
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    OK, I have an appointment with Dr. Langford and...

    OK, I have an appointment with Dr. Langford and also one with Dr. Cartin-Ceba at Mayo (he works w/Dr. Specks) for early February. I need to figure out how I want to coordinate with my local MD's. If...
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    Yes Sangye, you are right, I am worth it. I just...

    Yes Sangye, you are right, I am worth it. I just get frustrated with the amount of time and now $$ I have to spend trying to battle this. I am tired and want a break, but just keep plugging along...
  4. Thread: Sangye's Status

    by Momof3
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    Happy Birthday, thank you for being such an...

    Happy Birthday, thank you for being such an active part of this site, you are wise and helpful (and funny). Enjoy your special day.
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    Jana, why did she change you from Meth to Imuron?...

    Jana, why did she change you from Meth to Imuron? How long where you on the meth before they decided it wasn't working? I have been on Methotrexate since April 09 and take 27.5mg SQ every week. I am...
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    Thank you everyone for your help. I have an...

    Thank you everyone for your help. I have an appointment w/Dr. Langford in February but am asking my local rheumy to do a physician to physician consult with her before the end of December. I am...
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    Thanks Sangye for the confirmation. I was feeling...

    Thanks Sangye for the confirmation. I was feeling pretty confident w/ my care and am an RN but the recent news about my PFT was disturbing since I wasn't "feeling" any differently.
    Any of you who...
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    Which specialist/clinic?

    I am trying to figure out which clinic/specialist to go to. I have been treated since March of 2009 by my local Rheumatologist and the pulmonary specialist at University of Washington. I have been...
  9. Thread: blue/grey hand

    by Momof3
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    blue/grey hand

    My lft. hand has been turning dark grey/bluish for the last two days. It is the same temp. as my rt. hand, no pain but a little aching in my arm. It lasted for over 3 hours last night. Has anyone had...
  10. Thread: Methotrexate

    by Momof3
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    6,735

    I switched from oral Methotrexate to injections 3...

    I switched from oral Methotrexate to injections 3 weeks ago because we are increasing the dosage hoping it works. I was very nauseated and had stomach pain with the oral dose. Now that I am taking...
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    Thank you so much for this post, it expresses...

    Thank you so much for this post, it expresses exactly how I feel-confused...not sure what to look for and what the goal is. I was diagnosed last May and started reading this blog, someone posted that...
  12. Thread: H1n1

    by Momof3
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    I got my H1N1 single dose vaccine (no thermesol...

    I got my H1N1 single dose vaccine (no thermesol in single dose) today and my kids got the nasal spray( I tried to get them the injection but the clinic said it wasn't available for non-high risk...
  13. Is meth & pred ok as only treatment?

    I was just diagnosed in April and have "limited WG", no kidney involvment. They have not been able to biopsy anything positive but do have elevated ANCA's and proteinase 3 levels. Have had...
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    Has anyone accessed the Cleveland Clinic for...

    Has anyone accessed the Cleveland Clinic for care? My first rheumy recommended I contact Dr. Gary Hoffman at the Cleveland clinic, anyone know anything about them?
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    Vasculitis centers?

    I have seen the recommendations on this post to find a good VF MD who knows Wegs. I know of John Hopkins, are there others? How do you determine if they are good? Do they work in conjunction with...
  16. Thread: Newly diagnosed

    by Momof3
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    I am having a hard time breathing when I lay...

    I am having a hard time breathing when I lay down. I can't sleep on my side at all anymore, like my lungs get squished and I don't move any air. I can sleep on my back but I have to sit up every few...
  17. Thread: Newly diagnosed

    by Momof3
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    Causes?

    Thank you all for your calm, words of encouragement. I asked about the climate change because we moved from California to Seattle 6 years ago and I am wondering if the wet/cold/mold increased my...
  18. Thread: Newly diagnosed

    by Momof3
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    Newly diagnosed

    Hi, I just recieved diagnosis of WG 2 weeks ago after symptoms for 10 months. I was started on prednisone and methotrexate. I was diagnosed w/o a positive biopsy, I have positive ANCA and protenase3...
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