New Member story and questions

[Guest guest]

Dear Group;

I just wanted to introduce myself. My name is and I'm

originally from North Carolina, but currently I'm a seminarian in

Washington, DC. I've been here in DC for almost three years now.

First, thank you for creating this group. I'm sure it will prove

beneficial to me as I try to sort through over 48,000 messages!

Second, last week, on my 27th birthday no less, I was diagnosed with

Relapsing Polychondritis. I had never heard of it before. I'm sure

most all of your stories are the same, so I'll keep mine brief. I

grew up a healthy kid and played some sports in high school. The

year I went off to college I had some health problems. I just didn't

feel so good. Student health determined that I was diabetic. Well, I

had put on several pounds my freshman year, and after dieting I was

able to regulate my diabetes via diet and exercise. By the time I

graduated, I had to be put on several medications to help regulate

both the diabetes and the effects of the disease. In January of

2001, a year and a half after entering seminary, I had an incident

of A-Fibrillation. It lasted 37 hours and I was in the CICU for

three days. The electrical systems of my heart began to fail even

though my heart muscle was just fine. After regulating this event

there were a few others that required hospitalization. But,

eventually it was regulated. However, I never felt better. I started

having cases of colds that wouldn't go away, bronchitis that seemed

to come and go not paying attention to any cough medicine I was

taking. Last year I also started losing weight. I dropped almost 50

pounds. Sometime in August of last year a lumps developed

simultaneously on my right ear, in my throat, and believe it or not,

in my right eyelid. I went to student health, bad mistake; they

treated me for months like I was crazy. Finally, I went to an ENT.

He did a surgical biopsy and found that these lumps were cartilage

in a state of degeneration. The scary part was the rate of growth.

They started out as an annoyance, but began to cause some pain by

October of last year. Finally, my ENT recommended a rheumatologist.

I saw him in January. He took tons of blood work tests. He also sent

me for a pulmonary test and reviewed my history. By February there

were some problems with the veins in my legs and with numbness in my

hands and feet. By now I've lost nearly 60 pounds and I felt tired

all the time. My lab work showed that there was swelling somewhere

in my body. I believe he said my C Reactive Protein something was

almost 50 and the Westergren ESR test was 50. There were other tests

that pointed towards swelling as well and the pulmonary tests

concluded that there were airway restrictions. So, as you can guess,

on March 11th the doc told me that I had something that wasn't too

common called Relapsing Polychondritis. He said it wasn't a good

thing to have. He is sending me for an MRI of my throat to determine

the extent of the damage there since it is now difficult to swallow

without overcoming the lump and hearing a loud clicking sound. He

may start me on steroids and cortisone shots, but because I am

diabetic he is not sure how I will react.

So in addition to sharing my story, I wanted to know if anyone else

has had electrical problems with their heart develop as a result of

this illness. My doctor and cardiologist don't know of any links,

but it does seem related since the RP became troublesome immediately

following the heart problem.

Thanks again for this group and your support. You are all remembered

in my daily prayers.

Sincerely,