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Wegener's or sarcoidosis

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  • #1

    Wegener's or sarcoidosis

    I went to an ENT for this terrible lesion I have in my right sinus. He numbed my nose and stuck a scope up there and told me he thinks I have Wegener's or Sarcoidosis. I was supposed to get my blood drawn for a specific test that I haven't had done yet, but I've been too sick to go get it done. I've got a followup appt on Friday.

    Has anyone had any experience with either of these? I hate the thought of having yet another dx, but, it might explain some of these crazy symptoms I've been having.

    I've been using a steriod nose spray (Nasonex) and doing saline irrigations 3x a day and it's still not any better. This is one of the most painful things I've ever experienced. Who'da thought that your sinuses can cause you SO much pain?
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.
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    • #2
      I have never heard of that.. But wanted to say glad you are back posting
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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        • #3
          Sandy-
          Never heard of Wegener's and sorry I dominated the conversation this afternoon. You should have said something.

          Hugs,
          Barb
          (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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            • #4
              Dr. House mentioned "Sarcoidosis" once... I don't remember what it is, but it must be scary possibly having something that was mentioned on that show!

              I hope you get answers and relief soon!
              ~Diane
              dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

              Medical History:
              c-sections: 1988, 1991, 1997
              Viral Arthritis 1998 (Like RA, but went away!! )
              Pterygium & Dry Eyes since 2005
              Hysterectomy (Fibroids) 2006
              ~~~~~~~~~~~~~~~~~~~~~~~~~

              Me & Jerry ~ Sammy & Ryan
              ~~~~~~~~~~~~~~~~~~~~~~~~~

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                • #5
                  Sorry Sandy,
                  I've never heard anything about them but I had chronic sinus infections when I was younger and boy I know what you mean about the sinus pain. They really can hurt like hell. I hope you get to the bottom of the problem and get some relief.
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

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                    • #6
                      I don't know about either condition. I just wish you could learn about them from a book and not experience! It's been an awful year for you; I hope you feel better soon.

                      Sending warm well wishes,
                      Donna
                      Stay safe


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                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                       [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

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