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Life With Lupus

Another diagnosis :(


#1

So my rheumatologist believes I have ANCA negitive Wagner Granularmitosis since my Vasculits has sped to my left sinuse and mastoid air cell as of October 2014 and both the rhuemy and Intenerly referred pulmanologist aagree i have vasculits going on in my lungs /airways because of my CT scans, symptoms and the specific meds that almost immediately improve my lung function .. She did an intenal referral to a sinuse disease specialist ENT and a CT .. i saw the ENT on Monday and he agrees it's wagners presentation with my polycondritus causing the facial pain and spongyness around the area above the side of my left nostnostril up to lo cheek bone. . He said my septum looks good (it doesn't hurt anyway ) and my sinuse spacing is normal on the CT but it's the relapsing mucosal inflammation and the bone and cartilage around the sinuses that's the problem :/ yesterday i got an email from the University of Miami patient portal saying my rhuemy put in orders for me to start Rituxan next Friday and will have to go every 7 days for the next 3 weeks after then mantainance in the next months. It's a 5 hour infusion ! And i thought Cytoxin was bad at 4 hours lol . Not sure if i continue with the 1500 of cellcept in between but I'll ask next week when im there. . My 2015 new years resolution was to not spend so much time at UM Sylvester but I've been to they almost every week since the first week of January for one thing or another, guess i should have picked a more realistic resolution :)


#2

Hi, dawncelest.

I am sorry to hear you’ve another diagnosis. I, unfortunately, am not familiar with Wagner’s. Let’s see what others may have to offer with their experiences. I wanted to simply share support and encouragement. Stay strong! And please keep us posted on your progress with the Rituxan treatments.

Hugs,

Laurie


#3

I'm sorry to hear they've given you yet another diagnosis. I truly admire your strength and courage, keep up the great fight!


#4

So sorry! Can I ask what symptoms you had. I have a feeling and audible noise in my sinuses that is like rice krispies snapping and popping. Can’t figure out what it is from. Hope you get relief soon!


#5

Thank you friends :slight_smile: im upset but gotta think positive thoughts because depression and stress just exasperates autoimmune diseases. . I got the CT (with /without )report of my sinuse and facial structure in my email this morning and Wouldn’t ya know its not "totally normal " like the ENT said it was… i apparently have twice as much fluid thothroughout my entire mastoid aircell with bone erosion and sclerosis :confused: i guess in fairness to the ENT it was a high resolution scan and it’s the radiologist job to scourge ever inch of the images . I know that dr was very interested in the shape and condition on my septum and sinuse because of the polycondritus, those looking perfect anyway lol… Karrie i already had vasculits in my lungs but the sinuse/mastoid symptoms started with a violent pop in the upper left corner of my nose followed by a gushing left side nose bleed. … it felt like i was sucker punched:/ This was 10/2014 and since then ive had a brain MRI showing mastoiditis, a sinuse scope showing mucosal inflammation, relapsing enlarged vasculature in my left nose at my rhuemy appointments and now the CT showing mastoid erosion and that was the final criteria i need for a firm wagners diagnosis. i guess I’ve always been fortunate to get diagnosed pretty quickly with lupus, polycondritus and now this vasculits. even if and when blood work can be inconclusive or not convincing enough you can rest assured that imaging doesn’t lie! Of course your provider has to be skilled enough to know what scan will show whatever the best and pray the radiologist is really paying attention but all they are a very important piece of a diagnostic puzzle