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Thread: Eight years later

  1. #11
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    Default Re: Eight years later

    Thank you Rose, for sharing your experience with me. It is sometimes so hard to convince a Rheumy that maybe it is a flare. I hope you don't still have the intestinal problems and are doing well now.
    I'm having an Endoscopy on the 8th to check on the polyps in my stomach. He will also be stretching my esophagus and cking for any other crap.
    I went to the neurologist last week and had an EMG again, to ck for other nerve damage and the weakness on my lt. side. He now is sending me for a cervical and spine MRI.He thinks that I have a pinched nerve. It never seizes to amaze me, this unpredictable, opportune disease.
    All though I am getting old too!😂😂😂
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  3. #12
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    Default Re: Eight years later

    Sorry you are strugling with multiple issues, Jana. Sounds like WG activity... as for your bowels, I suggest you to ask for calprotectin test. If it comes back positive, its a relatively good indication for some kind of IBD. Can be wg inflamation in the colon, or Crohn's or Colitis. In the past I was told by GI dr. That I have WG in the colon but at the end of 2016 the diarrhea became so bad that I was diagnosed at April 2017 with collagenous colitis. The fact the we have WG doesn't rule out having other diseases as well...

    Sending you prayers. Please update us.
    (Btw getting my rtx on Oct 18 and Nov 1)
    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.

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  5. #13
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    Default Re: Eight years later

    The fact the we have WG doesn't rule out having other diseases as well...
    That is so absolutely true! On top of wegs, I have Granulomatous Hypophysitis, Unilateral Diaphragmatic Paralysis, Bradycardia, and Fibromyalgia. Those are the ones that are proven as much as they can be "proven". It is also suspected that I have Psoriatic Arthritis. All are a pain in the butt. It takes 18 drugs and 3 injections to keep things in-check, as much as they can be "in-check". Fatigue either from the disease or the drugs is a constant issue. "Great days", even "good days" are far to rare. You can read about all my failures by clicking on "my story" below in my signature block.

    Oh yeah! My parathyroid failed about 7 months ago. So, I'll update "my story".

    Cheers, all!!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  7. #14
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    Default Re: Eight years later

    Quote Originally Posted by vdub View Post
    That is so absolutely true! On top of wegs, I have Granulomatous Hypophysitis, Unilateral Diaphragmatic Paralysis, Bradycardia, and Fibromyalgia. Those are the ones that are proven as much as they can be "proven". It is also suspected that I have Psoriatic Arthritis. All are a pain in the butt. It takes 18 drugs and 3 injections to keep things in-check, as much as they can be "in-check". Fatigue either from the disease or the drugs is a constant issue. "Great days", even "good days" are far to rare. You can read about all my failures by clicking on "my story" below in my signature block.

    Oh yeah! My parathyroid failed about 7 months ago. So, I'll update "my story".

    Cheers, all!!


    Cheers, vdub ❤ what a list ! You "collect" the most rare stuff... Thank you for inspiring us with your good spirits ❤
    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.

  8. Likes Jaha liked this post
  9. #15
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    Default Re: Eight years later

    Time for an update, oh boy here we go! Well I hope most of you are doing better these days. I notice that there is not a lot of activity on here from some of us oldies. I hope this is a good sign for good health or as good as it gets.
    I made it through yet another Rtx infusion without any reactions. Those nurses at CC know me quite well by now and have it down to a science now.
    I now have yet another gift from Wegs, my back and neck are crumbling from use of steriods. I still am on 15mgs steroids per day The Neurologist called me and told me he was referring me to a Neurosurgeon. The ligaments that hold the nerve roots are hardening I have spurs and bulging discs and of course degeneration, arthritis and all the old people stuff. I have had to use a cane at times to be able to walk. I guess my nerve root is being pinched in several places. In other words I have various areas of stenosis in the neck and spine.
    I then received a call from the Neurosurgeon on a Sunday afternoon, telling me that he probably would not do surgery on me because of all my complications. He is sending me for physical therapy. I have been trying to walk everyday on the treadmill and have lost around 40lbs., I'm sure that helps, but it is still concerning when you can't walk at times, because your legs want to give out. I will try to loss more weight and strengthen my stomach musles. We will see how this goes.
    I have also had some good news in between all this. I had an Endoscopy and the polyps in my stomach have reduced greatly, due to stopping the stomach meds. in April. I have also been declared cancer free from my onocologist.
    I have good news mixed in with the bad and will deal with it as it comes. I have a lot of nerve damage and pain, but I'm still here!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  11. #16
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    Default Re: Eight years later

    Quote Originally Posted by Jaha View Post
    Time for an update, oh boy here we go! Well I hope most of you are doing better these days. I notice that there is not a lot of activity on here from some of us oldies. I hope this is a good sign for good health or as good as it gets.
    I made it through yet another Rtx infusion without any reactions. Those nurses at CC know me quite well by now and have it down to a science now.
    I now have yet another gift from Wegs, my back and neck are crumbling from use of steriods. I still am on 15mgs steroids per day The Neurologist called me and told me he was referring me to a Neurosurgeon. The ligaments that hold the nerve roots are hardening I have spurs and bulging discs and of course degeneration, arthritis and all the old people stuff. I have had to use a cane at times to be able to walk. I guess my nerve root is being pinched in several places. In other words I have various areas of stenosis in the neck and spine.
    I then received a call from the Neurosurgeon on a Sunday afternoon, telling me that he probably would not do surgery on me because of all my complications. He is sending me for physical therapy. I have been trying to walk everyday on the treadmill and have lost around 40lbs., I'm sure that helps, but it is still concerning when you can't walk at times, because your legs want to give out. I will try to loss more weight and strengthen my stomach musles. We will see how this goes.
    I have also had some good news in between all this. I had an Endoscopy and the polyps in my stomach have reduced greatly, due to stopping the stomach meds. in April. I have also been declared cancer free from my onocologist.
    I have good news mixed in with the bad and will deal with it as it comes. I have a lot of nerve damage and pain, but I'm still here!
    Try a stationary bike. Less wear and tear than a treadmill.

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  13. #17
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    Default Re: Eight years later

    I hope this is a good sign for good health or as good as it gets.
    I fall into the "good as it gets" category. I'm still quite fatigued, ache a lot, and have mild stenosis in my back. Like you, the neurosurgeon sent me to physical therapy that I pretty much knew wouldn't do much good and it didn't.

    Overall, I'm doing ok. I'm able to walk around for short spurts and we have been able to get away from the snow for part of the winter. No complaints!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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