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Thread: Dianosged November 2015 (25yrs old) Sinus

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    Default Dianosged November 2015 (25yrs old) Sinus

    Hi! My name is Lauren Goodwin Im new to forums but I joined to spread my story and to see if any one else has similar symptoms in the sinuses, and to see how they are being treated. Heres my story...

    Breaking it down in a timeline..

    -December 2013 symptoms started in Virginia Beach, VA
    (symptoms: an abnormally large booger in my right nostril, bloody noses)

    - February 2014 went to patient first they didn't know what was wrong with me prescribed me antibiotics

    - Went back to patient first antibiotics didn't work, they tested me for MRSA, tests came back negative.

    - May/June 2014 Finishing my Associates Degree, getting married, and moving to San Diego, CA
    (Still having the Large Boogers and bloody noses, not on any medications, other than the boogers I felt completely normal)
    (at this point I was extracting the boogers myself with tweezers)

    - Moved to San Diego, CA September 2014

    - Visited back home to Virginia Beach Va June 2015
    (at the end of my trip in Virginia Beach was when I started feeling horrible)
    (headaches, bloody noses, fatigue, loss of appetite, large boogers, overall achy)

    - After my visit back home I cam back to San Diego, CA and started the process of putting me on his health insurance plan and trying to book an appointment with ENT
    (My referral didn't approve until the end of july! From the beginning of june to the end of july my pain in my head was unbearable! the only way I can describe it is that it felt like burning bubbling lava in my head. I was in and out of the ER no one knew what was wrong with me they tested me again for MRSA still negative. and sent me on my way. )

    -July 2015 my visit with the ENT
    (He looks in my nose and says my sinuses are so filled that we need to book surgery right away.)
    ( My CT scan was also abnormal because i had a lot of bone loss around my nose, so much that he thought I had previous surgeries which I never had)

    -July 27 2015 I had surgery to clean out my sinuses
    (Ive never felt so good after my surgery! I was moving around like normal within hours after my surgery which he thought was odd)
    ( post op appointment number one said the surgery went great there sending it out for culture bc i had overgrowth of bacteria in my nose. and still thinking I had chronic sinusitis. He mentioned that during surgery he noticed a lot of dead tissue and inflammation in my nose. he put me on prednisone and recommended me to go to a rheumatologists to check out the inflammation.)

    - I booked an appointment with rheumatologist.....it took me THREE months to get in to see him, and everything went down hill.

    - Still seeing my ENT waiting for my rheumatologists appointment I went from amazing one day to the worse pain of my life over night.

    - My ENT put me on higher dosage on prednisone. (but as an ENT he can prescribe to much) so my pain was still unbearable the lava was now x10 I'm exhausted I haven't slept in over a week.

    - FINALLY seeing my rheumatologists took a bunch of blood tests he narrowed it down to 3 things by my symptoms and wegener was one of them. blood tests proved thats what I had. November 3 2015 I was diagnosed with wegeners limited granulomatosis.
    ( right before i was diagnosed with wegeners. my nose started to saddle which also confirmed I had wegeners.

    - The process starts... I was put on Methotextrate, prednisone, folic acid, and birth control.

    - I went from 130lbs to 178lbs I went into a lil depression, I was fat and my nose was gone. my overall appearance as a girl means everything and when this all happens it was extremely life changing.

    - here we are today! March 2017 I feel better, and my weight is down. (what a process)

    -Although my inflammation is down the bacteria in my nose isn't. I know this all takes time but I think I should have better progress with the bacteria in my nose. its a vicious cycle and we know how to control the inflammation just not the bacteria. with them going hand and hand I would like to know how everyone else is treated.

    My timeline isn't too detailed if you have any question I can elaborate on them! also I would like to share with everyone that I just received a nose prosthetic which helps with the appearance!

  2. #2
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    Hi Lauren,

    It seems your rheumatologist has you on a standard protocol for WG/GPA. However, the recurring nasal infections don't seem to be getting treatment. Your saddle nose is probably a form of necrosis. The underlying cause of your saddle nose needs to be determined and treated ASAP. This should help get all of your WG/GPA symptoms under control.
    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

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    Hi! I do agree that the bacteria in my nose isn't getting much attention and is causing everything else. My doctor doesn't seem ambitious anymore and as long as i am not in pain then his job is "done" this was the main reason i joined this forum as I'm at a loss. I will be switching doctors in september as I'm moving back to the east coast specifically washington DC so i hope to get into john hopkins and they can help me out more. my understanding from doctors and internet is that saddle nose is just a symptom in the wagerers disease and just goes along with the process? you don't think thats the case? there saying that the over growth of my bacteria in my noise is there becasue of inflammation. but i don't believe that to be true anymore bc my inflammation has gone down and my bacteria hasn't. I've gone to an infectious disease doctor and he sent me back bc the bacteria in my nose is a "normal" bacteria theres just an overgrowth of it.

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    I live in VA about 40 miles south of DC. If you want to get into Johns Hopkins you might want to start the process several months in advance of moving due to the waiting period for available appointments. I travel to Philadelphia to UPenn to see my rheumatologist, DR Peter Merkel and am very pleased with the care I get from him.
    Best of luck with your treatment and the move back to the east coast

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    oh wow! my hometown is Virginia Beach! yes thats what i was thinking too. thanks! I've heard good things about Penn will make that my second option thanks!!!

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