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Thread: Hello! Freshly diagnosed, New to the Forum, Hereís My Story.

  1. #11
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    Default Re: Hello! Freshly diagnosed, New to the Forum, Hereís My Story.

    My Mom is new to the GPA club. Anyone know if a 4.1 ANCA number is a bad number ?

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    Default Re: Hello! Freshly diagnosed, New to the Forum, Hereís My Story.

    Brittany,

    My mom who is 80 got diagnosed like you JUST A COUPLE MONTHS AGO. LOST HEARING - IN ONE EAR, LOST OPPOSITE HAND USE, LUNGS TOTALLY FULL. VERY VERY SICK,but now already in remission only 2.5 months later. The drugs do work, be hopeful. You will feel much better very soon from now.

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    Default Re: Hello! Freshly diagnosed, New to the Forum, Hereís My Story.

    When I have flare up my shoulders and arms lock up
    It normally take a month at 60 mg of pred to get the flare up down. I maintain at 15 mg of pred and methotrexate. But they always try the slowly lower the prednisone. . But it has failed once I get below 5 mg of pred.


    Sent from my iPhone using Tapatalk

  4. #14
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    Default Re: Hello! Freshly diagnosed, New to the Forum, Hereís My Story.

    Quote Originally Posted by BritMarie View Post
    Hello, My name is Brittany. Iím a 31 year old Pennsylvania girl who got diagnosed Tuesday, March 20th, 2018.

    My story isnít much different than the majority of people in that, since my first symptoms were bad enough to get my attention, itís been a nightmare getting diagnosed.

    A tiny bit of back story-
    I was born premature and have very mild Cerebral Palsy. Because of this, I live with general pain and joint stiffness, fatigue easily, etc.

    As the years have gone by, Iíve struggled with feeling terrible. I just assumed it was age and my CP- not going to the doctor, thinking it wasnít anything major.

    The things I noticed since about 15 years old were: Joint Pain & Muscle Pain, Severe Sinus Issues, Massive Headaches, Hand Numbness, Exhaustion. For the past 2 years, it had gotten extremely hard to breathe, at the slightest of exercise. Again I just thought it was me and actually beat myself my up for being so out of shape!
    Last year- February 2017, my fiancť got diagnosed with a very aggressive Leukemia and together we battled for 8 months before he passed away on October 31, 2017.
    So when all this started on December 14, 2017- I assumed it was just stress related.

    The beginning-
    My very first symptom that I went to the doctor for was hearing loss. I went to our local MedWell where I was diagnosed with an ear infection and given antibiotics. I tried those and they made me very sick and after a week did nothing. My hearing got worse and then suddenly over two days time I began to paralyze from my belly button up.
    My mom had to come to my place and help me stand up, sit down, get dressed, lift a glass. The pain was the worst I had ever felt. My mom was panicked because I have a very high pain tolerance. My arms and legs swelled to about double their size. My fingers locked up and would not bend. My skin broke out in dry rashes. After a few trips to the ER to be told there was nothing they could do, I suffered for weeks until they finally put me on prednisone while we waited for blood work. They tested for Lymes, Lupus, RA, PMR, all to no avail. My inflammation markers were through the roof so I got sent to a Rheumatologist.

    Immediately she drew tons of blood work and wanted XRays of all my joints and my lungs. She thought it was Psoriatic Arthritis. On the XRay of my lungs, they found a shadow, which led to a Cat Scan where I was told I had 3 large masses on right lung. I lost it thinking it was cancer.

    My Rheumatologist ordered a biopsy, and was fairly certain that the biopsy would yield an answer. My ANCA blood work was positive, and my inflammation was still bad. But she did not want to proceed without a biopsy.
    For the procedure I had to go off the steroids and as soon as I did, I would paralyze again.
    The biopsy failed. All they got was some muscle tissue.

    Extremely frustrated and at my wits end, I was told I had to get a VATS procedure. On Feb. 26th they removed all three tumors (which were benign). Turns out they were gigantic and extremely necrotized. The surgeon actually used the word ďgrossĒ.

    Finally on March 20th I got diagnosed with GPA/Wegnerís Disease. I was so happy to finally get an answer because I was beginning to think I was crazy.

    The Now What-
    I just started Methotrexate last week, Folic Acid, Prednisone 60, and an anti-biotic. It seems as if currently my kidneys are ok. I have a small amout or protein in my urine and Iím working closely with my Nephrologist. My lungs seem to be the worst affected at this time. But I can definitely breathe easier now that the tumors are out. Iím struggling this week with bad shoulder pain despite the Prednisone which is disappointing.
    Iím excited to meet and hear from other people with this disease and begin to educate myself through this forum. I feel so overwhelmed with so much to learn. Thank you so much for checking out my story!

    Brittany
    Hi and welcome Brittany,

    So glad you have been diagnosed and can work towards treatments that help you, thoughts are with you about your partner and a very tough trip you had to get to this stage.

    Shout when you need too we are all here to help each other..

    Ben x



    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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