Hello, My name is Brittany. I’m a 31 year old Pennsylvania girl who got diagnosed Tuesday, March 20th, 2018.

My story isn’t much different than the majority of people in that, since my first symptoms were bad enough to get my attention, it’s 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, I’ve struggled with feeling terrible. I just assumed it was age and my CP- not going to the doctor, thinking it wasn’t 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 fiancé 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 “gross”.

Finally on March 20th I got diagnosed with GPA/Wegner’s 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 I’m 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. I’m struggling this week with bad shoulder pain despite the Prednisone which is disappointing.
I’m 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