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Type: Posts; User: Velma

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  1. Replies
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    I see Dr Carol Langford for the WG and Michael...

    I see Dr Carol Langford for the WG and Michael Machuzak for the bronch situation. Usually I just do labs for her and check in to see if she wants to change anything. I see Mike every 4-6 weeks or...
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    Looks like great minds think alike because I have...

    Looks like great minds think alike because I have been looking into this for pain and inflammation myself. I know the pain I have is due to inflammation because when I increase the prednisone the...
  3. YES YES YES by all means go see them .. they are...

    YES YES YES by all means go see them .. they are the top hospital in the world that deals with WG. If they don't know they will find someone who does.. You will get the best treatment there .....
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    The same thing started with me and it is was the...

    The same thing started with me and it is was the little tube that drains the tear duct into the sinuses that was clogged. I had to have it surgically re-routed but since then all is good... have...
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    So I had the apt in CC today and my docs...

    So I had the apt in CC today and my docs attempted to open up the restricted airway again through bronchoscopy, only to find that the damage done from the metal stent placed by another hospital in...
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    Thanks everyone.. I am seeing my doc in Cleveland...

    Thanks everyone.. I am seeing my doc in Cleveland tomorrow for yet another bronch and I will see what he thinks we can do. I have tried the probiotics this week and feel fine.. bowels working a...
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    I am participating in a study through UPMC.. they...

    I am participating in a study through UPMC.. they take blood every 3 months or so and I fill out physical and mental questionnaire. No news on if it is helping but I am willing to give my dna to...
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    Probiotics actually helping us?

    So after managing this disease for 20 years as of this month, with flares on and off, I have had a lung doctor tell me that a gluten free diet and taking probiotics will keep my immune system quiet...
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    I have another bronch scheduled 10-12 and I am...

    I have another bronch scheduled 10-12 and I am gonna see if I can talk to Dr. Langford too. I have to do something about this for sure. Thanks
  10. Replies
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    Shannon I have been dealing with this since April...

    Shannon I have been dealing with this since April of 2013. My doctors sent me from WVU to UPMC in Pittsburgh where they placed a stent. BAD IDEA. The stent became embedded and after posting a...
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    Is this for stenosis or asthma or just WG in...

    Is this for stenosis or asthma or just WG in general?
    NO predi!!!! I might need to look into this for myself.

    Happy for you and doing my homework now for me! Thanks for the update!
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    lol this made me laugh.. too funny.. sad but...

    lol this made me laugh.. too funny.. sad but true.. lol I will share on my FB.
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    Nicole you are a living example of what I posted...

    Nicole you are a living example of what I posted just a minute ago.. having a supportive team of doctors will make a world of difference. I went through the same thing as you and did not flare for 7...
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    I am so glad you wrote in.. because when I found...

    I am so glad you wrote in.. because when I found out I was pregnant I was in remission too and was taking the Methotrexate and bactrim etc as a maintenance.. but wha-laaa surprise pregnancy. Okay...
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    I was told at age 24 that I would not have any...

    I was told at age 24 that I would not have any other children ( I had 3 year old twins and a newborn at the time of diagnosis). I was okay with that but then surprise, surprise, 6 years later while...
  16. Thread: Fatigue?

    by Velma
    Replies
    36
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    2,149

    I also am very tired the day of Mtx and a little...

    I also am very tired the day of Mtx and a little the day after too.
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    Most of the times I have had to do a round of...

    Most of the times I have had to do a round of prednisone it is a slow taper.. but try to do as the doc says and be mindful if you start to flare after being off of it for a couple weeks. I have...
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    Most of us have started out on Cytoxan it seems.....

    Most of us have started out on Cytoxan it seems.. as did I as well. I was switched to Methotrexate and have done wonderful for the past 18 of 20 years on it--at different levels of course. Please...
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    I met her and was examined by her a few months...

    I met her and was examined by her a few months ago and I quite agree she is a very nice lady and a wonderful doctor. I was very impressed.
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    Airway issues are not good and may not be WG...

    Airway issues are not good and may not be WG related at all. Good luck.
  21. Thread: Hair Loss

    by Velma
    Replies
    39
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    2,365

    Dear Danica, The same thing has started...

    Dear Danica,
    The same thing has started happening to me too and I think it might be my shampoo/conditioner. I have been using a designer cleansing conditioner called Wen by Chaz Dean and noticed...
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    I posted something similar to this and Bob...

    I posted something similar to this and Bob referred me to a wonderful doctor at the Cleveland Clinic named Michael Machuzak. I had a stent put in due to scar tissue in my bronchial airway in...
  23. Thread: Eye tearing

    by Velma
    Replies
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    1,469

    Sad to say the clogged tear ducts is probably the...

    Sad to say the clogged tear ducts is probably the cause of the tearing. I had the same thing happen first in one eye and then the other. I had the surgery to fix them both and now things are good...
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    This would be me!!! I had twins in 1991 - flared...

    This would be me!!! I had twins in 1991 - flared but with no diagnosis, 1994 another baby and 6 weeks later a huge flare in my right lung and then a diagnosis 6 weeks after she was born. Then I went...
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    I am not sure who you doctor with but Bob advised...

    I am not sure who you doctor with but Bob advised me to see his doc at the Cleveland Clinic who has experience with scarring and cryo-ablation and what not. Because of my issues with a stent being...
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