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Thread: Where is everyone?

  1. #21
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    I'm here - haven't been online (well, on social media-type sites) much any more. Got off Facebook this past summer because of the constant negativity us human beings share online these days. Plus, I've been pretty ill for most of this entire year and since it is now December, I'm a bit exhausted by it all. So anyway, I'm here, but down, exhausted, sick, and exasperated. I pray that the Good Lord blesses everyone on this board in the new year with better health, as ya'll have blessed me during my times of need. Love to all my Weggies!
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

  2. #22
    Join Date
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    Quote Originally Posted by vdub View Post
    Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

    Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....
    You are a tough guy, vdub. No doubt. Hang in there. I hope the pace maker will soon help you feel better.

    I try to google what you asked. Not sure if this is what you are looking for... but those are good articles:

    http://www.medscape.com/viewarticle/733606

    Wegener Granulomatosis Neuropathy: Types of Neurologic Involvement, Clinical Presentation, Differential Diagnosis

    Most of my search brought up articles about neuropathy.

    Please update us. Sending prayers ♡
    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.

  3. #23
    Join Date
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    I couldn't get into the medscape, but the other was useful. I think I'll start a new thread.

  4. #24
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    Quote Originally Posted by vdub View Post
    Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

    Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....
    Moved [VW] -- good comments, drz. I moved them to the new thread I started on this subject. Thanks, vw


    Last edited by vdub; 12-21-2016 at 02:04 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #25
    Join Date
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    I have to admit I do way more reading than posting, that being said I drop pred drops in my eyes several times a day.
    The blood vessels in my eyes have been compromised. I can increase the screen font to make it a bit more comfortable to read,
    but alas the keyboard stays the same size and I not an accomplished typist .

    Know that I do follow along and you all stay in my thoughts and prayers.

    Happy Holidays to all!

    Pat

  6. #26
    Join Date
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    I've been on Facebook a lot, and a bunch of us from here go there, too, especially for some special groups that have evolved around Wegs and other vasculitis, as well as for general purposes with friends and relative. I'm trying to do better at checking into the forum, too, as it is my first loyalty.
    Anne, dx'ed April 2011

  7. #27
    Join Date
    Oct 2010
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    Quote Originally Posted by MikeG-2012 View Post

    Happy Holidays everyone!!!!

    Attachment 2540
    Nice initiative MikeG.
    Happy Holidays to everybody on the forum.
    Living with WG/GPA since june 2010...

  8. #28
    Join Date
    Sep 2013
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    Just a quick "hello" and Happy New Year from me.
    I've been away from the site due to house move and continuing to organise kidney transplant. To be honest, it's a stressful time at the moment and I'm trying to avoid thinking about health issues.
    Wishing you all a healthy year ahead.
    Diagnosed April 1995

  9. #29
    Join Date
    Mar 2012
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    Suburban Columbus, Ohio, USA
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    Quote Originally Posted by gilders View Post
    Just a quick "hello" and Happy New Year from me.
    I've been away from the site due to house move and continuing to organise kidney transplant. To be honest, it's a stressful time at the moment and I'm trying to avoid thinking about health issues.
    Wishing you all a healthy year ahead.
    Hope everything progresses as hoped and planned...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #30
    Join Date
    Mar 2013
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    I too have slacked a bit in posting to this forum. It has gotten me thru some rough patches - just don't check as often when I'm not feeling bad. (Sorry) but I have had a while slew of new issues crop up since October '16, so I thought to check in today.
    Happy New year everyone! Here's hoping that 2017 finds a cure and we all participate with success.

    Sent from my SAMSUNG-SM-J320AZ using Tapatalk

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