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    Re: Diagnosed August 2020 - New to WG

    Sorry this occurred with you.... Stress, other illnesses can cause a flare... be kind to yourself, I have been diagnosed for 25+ years... The Rituxan is a great medication...You may find your MD...
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    Ongoing GPA symptoms with negative labs

    Hi everyone - Looking to see others experiences with similar issues. I have been diagnosed with GPA for over 25 years. Used Cytoxan for 10+ years as other meds were not effective for flare...
  3. Oh but for all the discussion and fears that are...

    Oh but for all the discussion and fears that are placed into people's minds to prevent development of a socialized medicine. Many articles I read discuss the levels of care that we recieve in the...
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    Jola - see if you can find a physiatrist - a...

    Jola - see if you can find a physiatrist - a rehab physician. I worked for a group here in Kansas - we saw many people with neuropathy combined with gait imbalance due to the neuropathy. They can...
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    Cindy - I am so sorry for your loss and the...

    Cindy - I am so sorry for your loss and the couragous battle that you and your family fought.... I agree, it is a disease that can twist and turn and you never know what will happen the next day......
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    Who let the DOGs out!!!

    wow! I so agree talk about a Alfred Hitchcock moment of what next... The dogs thought is all due to you...Sangye...
    http://www.youtube.com/watch?v=GUPGsIymFLs
  7. Thread: Funny Stuff

    by Nancy
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    Jack - you are so on the mark!!! My edema did...

    Jack - you are so on the mark!!!

    My edema did not start until after the RTX infusions. I had a blood clot in my left leg - no different than my right and I have had a sono done x 2 - negative...
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    Cindy - I wish I could confirm that everything is...

    Cindy - I wish I could confirm that everything is being done.. As a medical provider, sometimes what we do looks like a scene from the keystone cops, but has a purpose while other times, I hate to...
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    Word to the wise... I had been diagnosed with...

    Word to the wise... I had been diagnosed with "limited WEGS" x 14 yrs - lung involvement only.... on and off Cytoxan/pred as the cough/hemoptysis worsened and then got better... Last Nov - got an...
  10. Thread: Funny Stuff

    by Nancy
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    I agree - so far lasix is just another set of...

    I agree - so far lasix is just another set of pills - vene tried to stage them through the day... no results.. and the compression stckings - do not tend to stop the pitting edema... I may look up...
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    I am glad that you are out of the hospital.......

    I am glad that you are out of the hospital.... Nice place to visit (sigh) lousy place to be as a patient... Take time, I kept pushing and am just coming back... Your strong spirit is what motivates...
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    Have you called back to Dr Abdou's office and...

    Have you called back to Dr Abdou's office and spoken with his nurse Cindy? She will let him know what is going on - it sounds too much like WEGS and the oxygen level at 90% is worse than low...
  13. Thread: Funny Stuff

    by Nancy
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    Sangye - you are the BEST!!!! for finding funny...

    Sangye - you are the BEST!!!! for finding funny spots/videos and jokes.. Your additions always make me laugh really hard... BTW - have you recieved any insight to your edema? I saw my WEGS doc - my...
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    Has anyone heard from Lisa Marie and how she is...

    Has anyone heard from Lisa Marie and how she is doing?? I hope the meds that she was on worked and she is MUCH better....
  15. Thread: Sangye's Status

    by Nancy
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    Sangye.... Boy, same thoughts and wondering that...

    Sangye.... Boy, same thoughts and wondering that we all have had... It seems the new balance that we are having to seek is body dependent versus where we were in control before. The idea of a job as...
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    Sangye - I always tell people that possibly one...

    Sangye - I always tell people that possibly one of the reasons that the pain increases at night is less items for the mind to focus on ( number of people, how many are blond, brunette, are you...
  17. Thread: Funny Stuff

    by Nancy
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    My hats off to you all.... The "it" is stated...

    My hats off to you all.... The "it" is stated with the best of all love - not an alien type concept.... Kind of an endearing statement at worst.... but yes I agree, it does sound bad in print!
  18. Thread: Funny Stuff

    by Nancy
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    In our home - "fixed" animals become "it's" not...

    In our home - "fixed" animals become "it's" not him or her.... takes away the question if they were fixed what was wrong... : ) Great cat - if the cheese doesn't sell you can always use the same...
  19. Thread: Funny Stuff

    by Nancy
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    me next, me next!!!!!!!!! SO cute... I do have a...

    me next, me next!!!!!!!!! SO cute... I do have a 265 lb dog.... so i am kinda trained : )
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    Glad to here better - still wish you had an...

    Glad to here better - still wish you had an easier time breathing... Like Sangye stated - it will be better once back up and about... Glad to hear things are better or at least trending that way.......
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    So sorry to hear about your continued health...

    So sorry to hear about your continued health issues, new digs and the continued melodramtic experience - "to be sick or have a job - which will be the outcome - tune in Friday". It sucks - I...
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    Hi elephant - How are things with you? I just...

    Hi elephant -
    How are things with you? I just have not been checking in as frequently as apparently I should!
    Overall doing pretty well... I feel bad that I am doing so well and Lisa Marie is...
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    I am so sorry to hear about all of your issues...

    I am so sorry to hear about all of your issues Lisa Marie... I read back a number of days to see how issues have been developing... I hope that you will be better and out of the hospital by Monday....
  24. Thread: Weggies & Work

    by Nancy
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    Don't forget that Long term moderate to high dose...

    Don't forget that Long term moderate to high dose Ibuprofen use can also result in High blood pressure or worse than that Gastrointestinal bleeding/ulcers....
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    http://www.youtube.com/watch?v=TtqNA73DNnU ...

    http://www.youtube.com/watch?v=TtqNA73DNnU

    or, much better... First day on Prednisone.....:wink1:
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