Giving It A Name is Half The Battle

Bingo! Rheumatologist #2

This doctor is a specialist in Autoimmune Diseases and is an associate teacher at the University Of Utah Medical School. He said he was 60% sure I had Wegener’s. I had the ANAC test result that said I had it but I was missing a few things. He kept saying that there was something that we were missing, I remained on Methotrexate. Some days were good and some weren’t. Then in December I went into my appointment on a day that wasn’t so good. I was sweating, my face really hurt, my nose and eyes were red, I was out of breath for no good reason. After talking with me for a while he decided to check my ears. That is when he saw it. My red ears. 

Can I say he was excited? He nearly did a happy dance. He brought in another doctor and asked her to feel my ears, yes, they were hot and red. He asked me why I hadn’t told him about my red ears before? Well, maybe because all things considered, that didn’t sound like it was a big deal. That is when he named it… Relapsing Polychondritis… a cousin to Wegener’s. He sat with me and went through all of my symptoms and yes, I have every one of them but one. Which one? The only one I would like and that is weight loss. Sigh….. He promptly tripled my Methotrexate. My appointment had taken a long time so he told me to go home and look up the disease. My husband wasn't in my appointment, he met me after and I had to go get some labs done so I told him the name of the disease and went to the labs. When I came back, my dear husband had a very strange look on his slightly ashen face. "Debbie, honey, this isn't good".

“God gave me my husband so we could weather the storms of life together.”

Symptoms of Relapsing Polychondritis by the National Institutes of Health

There are no tests available that are specific for relapsing polychondritis (RP). A diagnosis is, therefore, generally based on the presence of characteristic signs and symptoms. For example, people may be diagnosed as having RP if they have three or more of the following features:

• Inflammation of the cartilage of both ears
• Seronegative (negative for rheumatoid factor) polyarthritis (arthritis that involves 5 or more joints simultaneously)
• Inflammation of the cartilage of the nose
• Eye inflammation conjunctivitis, episcleritis, scleritis, uveitis
• Inflammation of the cartilage of the airway
• Vestibulardysfunction (i.e. vertigo, hearing loss, Tinnitus

Every one! I had every stinking symptom. I was excited to give this craziness a name, until we delved into it more. See Three Ring Circus-Symptoms.

Where Do We Start Looking?

We made appointments everywhere to get checked out to see what autoimmune disease I was harboring.

• Spine Clinic:  While waiting for the Gastroenterologist I visited the Spine Clinic to see if we could find out the source of my back, side and hip pain. I thought that back pain was my kidney. It wasn’t and we finally decided it was my hip and spine. We had an MRI done on both my lumbar spine and right hip. A growth was found on my L5 and I had a lumbar epidural steroid injection. This did give me some relief for my back but that hip still hurt. I also already have cervical spinal stenosis and I had an epidural steroid injection for that too.

• Physical Therapy:  After some physical therapy for bursitis in both hips my physical therapist read my CT scan from my hip and told me I had a labral tear in my right hip. First takeaway: Found the pain in my hip. Had no idea the source of the tear.

• My neurologist ordered a brain MRI to see what was causing the pain in my face. Good news, I still have a brain and no tumors. I do have Trigeminal neuralgia  

• Gastroenterologist: My ophthalmologist mentioned Crohn's disease could be the culprit among other autoimmune diseases. I visited a Gastroenterologist who set up both a colonoscopy (check for Crohn’s) and endoscopy to see why I was in so much stomach pain. No Crohns yippee! However, my stomach was covered in small holes that were bleeding. These were around 40 tiny peptic ulcers probably caused by all of the NSAIDs I had taken for the pain I was in. Tylenol just doesn’t cut it for me. He took a biopsy of my stomach. 

This great doctor took a lot of blood tests then as he was leaving our appointment, almost as an afterthought, he ordered one more test. He said it was rare and the hospital lab draw would have to pay a lot of attention to this order. It was for ANCA. Takeaway: Bingo. He found the key to getting into a Rheumotologist.

With all of these tests we have found that I'm a real gem.

Oh, My Goodness, I’m rich!

Silver in the hair

Gold in the teeth

Crystals in the kidney

Sugar in the blood

  Marbles in the knees

Iron in the arteries

Diamonds in the cataracts

-:-             

I never thought I would accumulate such wealth 

......hee hee