I started having “weird” symptoms in March of 2006, with swelling of the face being the worst, so I went to my family doctor. He put me on an anti-inflammatory and sent me on my way. The symptoms got worse. My symptoms included: swelling in my eyes, face and neck; muscle cramps and twitching; dry eyes; night sweats; and fever. I went back to the doctor. He sent me to a specialist (I can’t remember what kind) who took a biopsy of the “fluid” in my face. It came back inconclusive. After many more back and forths with the doctor, he told me he wanted to admit me to the hospital to have them perform tests to determine what was going on. I went to the hospital, but they wouldn’t admit me because they said all I had was edema. I went back to the doctor. He referred me to a rheumatologist who took many vials of blood.
Several days later, the rheumatologist told me that they ruled out Mumps, Mono, Sjogren’s Syndrome, and a slew of others that I can’t recall. And the best diagnosis they could come up with was Sarcoidosis. I was told that this would be something I would have forever but that I may never have another symptom with it. So he put me on a 60-day prescription of Prednisone. After that 60 days, all my symptoms were gone, and I felt as well as I had before all the symptoms appeared. All was well … or so I thought.
Fast forward to April 9, 2013. I was chasing my puppy so she wouldn’t run out in the street (maybe 15 yards of running), and I was so out of air that I didn’t think I could WALK back to my house. I dismissed the notion that maybe it was because I was out of shape because I know my body, and this was different. So I went in to see my family doctor (I have a different one that the one I had in 2006). I asked her to test me for asthma. She took a chest X-Ray and had me breathe into a spirometer. The chest X-Ray had to be sent off, but she saw the results immediately from the spirometer, which confirmed asthma. She prescribed an inhaler and sent me on my way.
On April 18, 2013, my doctor called with the results of my chest X-ray, which revealed enlarged lymph nodes in my lungs and chest. She wanted me to have a CT scan the next morning, which I did. She called me the following Monday morning, April 22, 2013, and said that the CT scan confirmed the existence of the enlarged lymph nodes and wanted me to see a pulmomary specialist the same day, which I did. (Little did I know at the time that she suspected lung cancer.)
After reviewing my CT scan, the lung doctor wanted me to have a bronchoscopy to biopsy some of the lung tissue, so that was scheduled for April 25, 2013. As I was still in the recovery room, he explained to my husband that whatever was going on with my lungs had been there for quite some time as there was some damage to my lower left lobe. And the airway leading into my left lung was only open about the size of a pencil head. We had to wait a week before we got the results.
In the meantime, the lung doctor wanted to give me a breathing test, which I did on May 1, 2013. Another confirmation that my airway was constricted, and he put me on Advair and Albuterol.
The following day, my husband and I met with the lung doctor to go over the results. He said, “The good news is it isn’t cancer; the bad news is it’s Sarcoidosis.” There’s that dreaded word again! He said at that time he wanted to treat it with a 12 day taper prescription of Prednisone and scheduled me to come back in four months for another breathing test and chest X-Ray. He also scheduled me to have blood work to see if it showed up in any other organs and told me to see an ophthalmologist to make sure it hadn’t gotten in my eyes. Both of those came back normal, thank God!
On Monday, May 13, 2013, (day 11 of the Prednisone), I noticed a burning, tingling sensation on the left side of my face that would come and go, sometimes mild, sometimes painful. So on May 15, 2013, I went back to my family doctor. She ordered a Brain MRI and also wanted me to have another CT Scan (of my abdomen and pelvic area this time) as the previous CT scan showed enlarged lymph nodes in my stomach, which she never told me about.
That same day, I had the Brain MRI (and I pray to God that I never have to have one of those again!). And the following day on May 16, 2013, I had the CT Scan. The brain MRI came back normal; the CT scan confirmed the existence of enlarged lymph nodes in my abdomen. At this point, my family doctor wants me to follow up with a rheumatologist, and I’m in the process of trying to find a doctor in the Dallas area (or even in the Texas area) who KNOWS about this disease, not just one who TREATS it.
The latest episode occurred last night while at the movies with my friends. Out of nowhere, I had an asthma attack where I couldn’t get any breath. That was my first such episode and hopefully my last. It scared all of us.
The most frustrating part of this disease for me, as I’m sure it is for others suffering, is the unknown. It seems like after being fairly healthy all my life, all of a sudden, an onset of symptoms just appear out of nowhere. And although I appear fine, I feel like there’s a battle raging on the inside of me, and there’s not much I can do about it.
I empathize with the Sarcoidosis sufferer who has little to no symptoms, and I empathize with those who have many. And I pray for a cure. I’m thankful that my faith is strong. God has carried me these last several weeks during all this testing, and I know without Him, I would be a basket case. But instead, I have had incredible peace. This peace and hope I send out to all of the other Sarcoidosis sufferers. Blessings to all!