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Thread: Gastro. Issues - Others?

  1. #21
    Bing505z is offline Banned for being a douchebag
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Helen View Post
    Hi Bing, I was referring to Rheumatology, where one was under the Vasculitis Foundation. The front desk claimed to not know if their own Rheumatology Dr. in the next room had GPA knowledge. It's a simple question they could've inquired, but they wouldn't. Somehow, someone (suspect the ENT) alert them to state "your issues are likely allergies" and "go to an allergy clinic", to decline an appt. This came from front desk staff who I've never met. I don't know how, but appears by reviewing patient's info. in the computer medical portal system. I simply do not know. (The only other person to throw out "allergies" was the recent ENT). So, oddly denied a Rheumatology consult. based upon this

    What exactly is an Internal medicine Dr? What's the difference between this and a GP?
    I wish I was able to be seen by the ENT my Gastro specialist (who suspected/dx Wegeners) referred me to. But the ENT agency blocked it, claiming it was "Against Policy" and only allowed to see the same lousy one from the past. I will eventually post a (too long) explanation of this ENT exp. to AnneKat. I hope members here will forgive me for it's length, as it was too difficult to summarize the situation. -H.
    Ahh I see, you do not have a solid diagnosis. Your post from another thread concerning ears, you know the one about Eustachian Tube Dysfunction, was very informative, it was excellent, but I noticed it was so different and out of character from your other posts, from which one would see utter confusion. As if it's another...well I digress.

    Here's the thing, when I was diagnosed, I read a lot information here and there, and I will tell you most of the info I found extremely helpful in directing me on how not to proceed, and most importantly on how not to allow my physicians to proceed. Physicians I hired to work for me, period. I have a team of four, and there is a pecking order, one which I decided: Pulmonologist, ENT, Internist, Rheumatologist. I only need the Rheumatologist for blood work and to hang an IV bag on a pole if I need maintenance, and If I need an opinion. Of course, if I continued to have kidney involvement, at the beginning I did have kidney involvement (Rituxan turned it around), I would have the Nephrologist up at the front along with the Pulmonologist. It took roughly 30 days to DX and initial treatment was 45 days of Cytoxan, Pred, and Bactrim. Rituxan treatment began and I stopped taking Bactrim, and weaned off pred. I am 4 years into this now and in remission. In the long run, from what I have seen on here on how not to proceed, my docs are on the same page. We go on how I feel, and steroids and antibiotics are not for daily or weekly use. Complications from GPA is what gets you and over use of those drugs will lead to complications.

    When searching for a physician, use Cigna's search engine, or another big insurance carrier's website. They have deeper pockets, and their algorithm-based search engines are better. I found the foundations map incomplete and lacking.

    Helen, I hope you find the right doctor and if your Gastro suspects GPA, then stick with him/her and get things going in the right direction.

    Cheers!
    Last edited by Bing505z; 03-03-2018 at 01:31 PM.

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  3. #22
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    Default Re: Gastro. Issues - Others?

    I must eat something substantial to cushion the Prednisone or I will vomit. For me one cracker is not enough. I try to have protein. One time I forgot and took 30 mugs Prednisone on an empty stomach. I had the most horrible dry heaves followed by chills. I also take a strong Probiotic and eat two prunes a day.

  4. #23
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Masha View Post
    I must eat something substantial to cushion the Prednisone or I will vomit. For me one cracker is not enough. I try to have protein. One time I forgot and took 30 mugs Prednisone on an empty stomach. I had the most horrible dry heaves followed by chills. I also take a strong Probiotic and eat two prunes a day.
    We must take the pred with decent food, and in the morning.
    I cant bear probiotics.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #24
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    Default Re: Gastro. Issues - Others?

    My wife and I have changed our diets the past few years, and about 6 months ago, I found a smoothie blender on sale for $40. We have been making fruit smoothies at least 5 days a week for breakfast. We use fresh or frozen fruit (with no sugar added), almond milk, and protein powder. I was hesitant at first whether or not that would hold me as a meal for more than an hour, but over time, I found it is really all I need for the first meal of the day.

    Had I had to do it all over again (which I hope I never do, but the odds are against us weggies), I would have used the fruit smoothie to take with my pred. Good antioxidants with the fruit and berries, and natural calories, not complex ones that add weight.

    Just a quick thought for those who might be struggling with pred, hungry issues and weight associated with it.

    Smooth on everyone!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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  7. #25
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    Default Re: Gastro. Issues - Others?

    Great idea! I’m pulling my blender out of retirement. This site has been a plethora of information for those of us learning to deal with the disease and the drugs that go with it. From the bottom of my heart I thank y’all. Masha

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  9. #26
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Masha View Post
    Great idea! I’m pulling my blender out of retirement. This site has been a plethora of information for those of us learning to deal with the disease and the drugs that go with it. From the bottom of my heart I thank y’all. Masha
    You are welcome! To make it stay cold, do a small serving of fruit and add crushed ice to it when blending. Water takes off some calories, but makes it cold and yummy.

    We get almond milk in vanilla and chocolate (for those of you with nut allergies, soy works too). The vanilla has only 60 cals per serving, chocolate has about 90-100. We use vanilla with fruits like peaches, tropicals, etc. Chocolate with berries only.

    For a real treat, we buy chocolate cashew milk. WOW is that good!!

    Someone my wife works at puts aloe-vera in hers. We haven't tried that yet.

    Smooth Blendings!!!!!!!!!!!!!

    top-rated-blenders-for-smoothies-300x300.jpg
    Last edited by MikeG-2012; 03-23-2018 at 08:08 AM.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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