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  1. Replies
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    Sticky: How do you know

    Well it's hard sometimes because the signs are like a cold or allergies. I gather my thoughts of what my symptoms are, how long have they been going on and are they getting worse? Do I sleep more? ...
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    Sticky: Trish. It's possible the prednisone has caused...

    Trish. It's possible the prednisone has caused wight gain and fluid retention around the joints which will cause pain. Do not stop taking prednisone it will cause severe pain. Your body becomes...
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    RASH.... Never had skin involvement but I have...

    RASH.... Never had skin involvement but I have this mysterious rash on my hip near my right kidney that has followed about three weeks of mysterious bruise like pain. The rash does not hurt, itch,...
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    I'm a little over a month out since dilation and...

    I'm a little over a month out since dilation and laser. Saw dr Yung today and my airway has not shrunk since surgery Yay!!!!!!!!!! And my air volumes in an out have improved since surgery double...
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    I saw dr Katherine Yung she is an airway surgeon....

    I saw dr Katherine Yung she is an airway surgeon. I see her tomorrow for my month follow up. So far she has been great!!!


    P.O.W.E.R. Positive ongoing waves encourage remission
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    Any news on getting a diagnosis? P.O.W.E.R. ...

    Any news on getting a diagnosis?


    P.O.W.E.R. Positive ongoing waves encourage remission
  7. Replies
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    Sticky: Skin rash.... I've had WG for over 30 yrs I...

    Skin rash.... I've had WG for over 30 yrs I don't ever recall having a skin rash. Can anyone send me a pic of what there's looks like. Mine is flat and red but not itchy. It's been there for several...
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    Hi Jade. I'm on the west coast but I contacted dr...

    Hi Jade. I'm on the west coast but I contacted dr Peter Merkle to help me find a doctor in California. I would try him as well


    P.O.W.E.R. Positive ongoing waves encourage remission
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    Hi Gigi. Welcome to this forum. I'm sorry to...

    Hi Gigi. Welcome to this forum. I'm sorry to hear of you being diagnosed with WG. However I'm glad they finally did get a diagnosis so now you can start to get better. I've had this disease for 34...
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    Prednisone won't stop it from it's continued...

    Prednisone won't stop it from it's continued destruction. You will need to be on immunosuppressive medication I sure hope you get a diagnosis pronto. Keep pushing to get In to be seen it's so...
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    I'm dancing, walking and talking at the same...

    I'm dancing, walking and talking at the same time. Dressing without stopping to breath. Thank you thank you thank you. Happy to be feeling this good. I hope all of you are doing well too!!!!

    ...
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    I had a wonderful experience with UCSF Dr...

    I had a wonderful experience with UCSF Dr Katherine Yung did laser and dilation on my subglittic stenosis on 12/2/14 and I feel amazing. Dr Sharon Chung returned my phone call and referred me to her....
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    Status post DILATION 24 hours

    AMAZING!!!! Amazing!!!! I feel AMAZING!!!!! I had laser with the Co2 laser and balloon dilation at USCF with Dr Katherine Yung It went so well and I can breath so amazing today!!!! After 23...
  14. I agree with Alaskatom. A second opinion in the...

    I agree with Alaskatom. A second opinion in the same office might not help out much. Most insurance do pay out of network. If it's just the consult you have to pay for call and find out what the...
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    Donna. I think you may need to go to the Mayo...

    Donna. I think you may need to go to the Mayo clinic. Just what I have read here on this forum. They seem to be the best. I have subglittic stenosis and as far as I know (CT on 26th) I don't have...
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    I had kidney involvement in 1979. Apparently my...

    I had kidney involvement in 1979. Apparently my kidneys were very sick and lots of blood in the urine. They are doing just fine today. I have had healthy kidneys since treatment was started. I need...
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    I was a very healthy little girl but always ran...

    I was a very healthy little girl but always ran random low grade fevers off and on. Started having nose bleeds and ear aches. The drs couldn't find anything then wham I couldn't eat , slept around...
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    Here is the video:...

    Here is the video: https://www.youtube.com/watch?v=BifdvorrUJ8


    P.O.W.E.R. Positive ongoing waves encourage remission
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    From what I have read the stents are trouble....

    From what I have read the stents are trouble. They break down and get imbedded in the lining of the tissue and to remove them can be a mess. I would look into other options. I'm looking into laser...
  20. Like Pete said the hunger can be so great at...

    Like Pete said the hunger can be so great at higher dose but when you taper it should be less. Is it possible it's just normal now compared to at a higher dose and it just feels like she is eating...
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    You were diagnosed just before me. I'm at 35...

    You were diagnosed just before me. I'm at 35 years. July of 1979. I was 9. How old were you me2? Also forgot to mention that this will be at a health store or herbal store. Not at pharmacy. It...
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    Nasal dryness NEW SPRAY!!!!

    2092
    This was suggested by my ENT. It works so well for dryness and it's a natural grapefruit seed extract. It's called XLEAR XYLITOL. IT REALLY HELPS!!!!
  23. Thread: WG days!

    by daystarr8
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    Yes but the best way to deal is to get up every...

    Yes but the best way to deal is to get up every day treat the things that are needing attention and enjoy the rest of the day. It has to be hit head on first thing or depression sets in for the day....
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    Thank you mishb. Yes this surgeon follows several...

    Thank you mishb. Yes this surgeon follows several WG pts so I'm not the experiment or the first timer for her. I'm nervous but I'm a firm believer of positive thinking. I hope all is well for you.
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    Thank you, thank you, thank you!!!!! Yes this...

    Thank you, thank you, thank you!!!!! Yes this has help me so tremendously. I have emailed my surgeon some questions that the video brought up and I hope they respond. I'm afraid of laser but I do...
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