Why is KFK Sick?
2006-01-30 11:39 p.m.
This is the full story of my diagnosis and a collection of helpful information I've found on the web. I'm also putting this up here in case other people get diagnosed with this condition and are as freaked out as I was. You'll get better. Mostly, it's just a matter of time.
It started with strange symptoms that no one could explain. First my parotid glands swelled up like I had the mumps. My primary care physician told me that the only person she had seen with this condition was a woman who had dental work done in El Salvador and since I had never been to a third world country or had any type of dental work, this diagnosis didn't quite jive but I took the two rounds of antibiotics in stride until I had a full body allergic reaction. I was then placed on steroids and my symptoms seemed to get a little better.
Then my joints started to hurt something horrible and my parotid glands quit producing spit. I would choke on my food because I wasn't making enough saliva in order to swallow. I was also routinely going blind by 5:00pm and I had this ugly purple rash on my lower legs. The doctors were randomly throwing around names like Sjogren's Syndrome, Lupus and autoimmune disorder. I was referred to a rheumatologist nurse practitioner who took a lot of blood and said "don't call us, we'll call you."
Then one night the left side of my face went completely paralyzed and my blood pressure sky rocketed to 256/126. Holy fucking shit, batman. They sent me for a head CT scan because they thought I was bleeding into my brain. I thought I had a stroke. They decided I had Bell's Palsy. More steroids, antihypertensives and some acupuncture took care of it in ten days. Then the same day the left side of my face got better, the right side of my face went completely paralyzed. Back to the hospital. I called my rheumatologist and told him that something was really wrong with me - really really wrong. I got a phone message back from a rude nurse that told me my blood work was all off (I had a high sed rate, elevated C-reactive proteins, increased ACE level, and a very low white cell count) but it was all probably related to the Bell's Palsy and sometimes people just get Bell's Palsy on both sides of their face. It was incredibly rare but it could happen.
I thought they were full of crap and I was terribly frustrated that no one was listening to me. All I knew is that I was very ill. I really thought that I was going to die. I had random joint swelling, evening blindness, a dark purple rash on my shins, parotid glands that did not make spit, and bilateral facial paralysis. This was not Bell's Palsy or Sjogren's Syndrome. Hind sight is 20/20 this was a presentation of Sarcoidosis called Heerfordt's syndrome which is defined as: "the association of facial nerve palsy with anterior uveitis and parotid gland enlargement."
I was terribly frustrated because no one wanted to look at the big picture. I had an ENT, physiatrist, rheumatologist NP and primary care doctor, none of who wanted to take full responsibility of my case or knew what the heck to do with me and my constellation of symptoms. We all just waited until the next catastrophe happened.
The dry eyes and blindness were getting worse and I was finally referred to an ophthalmologist who took one look into the back of my eyes and said "Oh honey, you don't have Sjogren's Syndrome you have Sarcoidosis." My eyes were full of granulomas and scar tissue (she called it mutton fat and KPs) and I had severe macular edema. It had taken me so long to get there that she was afraid some of the damage would be permanent. I was then sent for even more blood work including a test for TB and syphyllis as these conditions can cause granulomas too. I can't begin to tell you how fun it is to flirt with the guy who is testing you for syphyllis. "Call me when the test results come back negative!" I was beginning to look like a heroin addict due to all the bruises on my arms. I was also sent for a chest x-ray, CT scan of my chest, EKG, echocardiogram and pulmonary function tests. I was then referred to another rheumatologist (an MD this time!), a dermatologist and a pulmonologist.
I had two biopsies done, one in my lower lip of my salivary glands and one on the top of my right foot for the rash. Both were positive for granulomas and sarcoidosis. So far my heart and lungs have been spared but it's in my eyes, nervous system, parotid glands, joints and hilar lymph nodes. I tire easy. Things that most people consider normal, like grocery shopping, leave me sweating and shaking uncontrollably. I wake up in the morning hunched over like an 80 year old woman. It like during the night someone shortened all my muscles and ligaments. Without painkillers and anti-inflammatories I wouldn't be able to get out of bed.
Most people with this condition spontaneously get well in 2-3 years. I've been sick for over two years so I'm counting on this going away completely soon. I've made an agreement with my body that this is only a temporary set back. I'm not going to be someone who is chronically ill. I've got too much to do.
I've taken many tapers of Prednisone then was started on oral Methotrexate. This drug made me throw up once a week (I'd take it on Friday and usually throw up Sunday mornings). We switched next to me self injecting 6ccs of Methotrexate for six months. My liver and kidneys did just fine on this drug. Eventually my eyes quit giving me problems aside from being dry (my ophthalmologist thinks I have permanent scar tissue causing this problem), my CBC was normal and I had a normal chest X-ray. I have had steroid (Kenalog) shots in my ankles that have helps with the pain radiating up my shins.
The following is a collection of links of websites with good information about sarcoidosis. There is no "cure" and anyone trying to sell you one is full of crap. I love Eastern medicine. Take Chinese herbs, get acupuncture, just keep going to your Western doctor and take the bloody steroids. They work. They'll save your internal organs. You know, those things you need to live. (You may need an account to read E-medicine articles but accounts are free. E-medicine provides articles written by physicians and peer reviewed by other physicians).
Articles on Sarcoidosis
- American Family Physician - Sarcoidosis Treatment
- E-Medicine Neurosarcoidosis - Neurology
- E-Medicine: Sarcoidosis - Emergency Medicine
- E-Medicine: Sarcoidosis - Opthalmology
- E-Medicine: Sarcoidosis - Dermatology
- National Institute of Health (NIH)
- National Jewish Medical Center
- The Merck Manual
- Mayo Clinic
- Sarcoidosis - A Patient's Guide by Medic8
- Web MD
- Model Patient : My Life As an Incurable Wise-Ass by Karen Duffy
- Me & Sarcoidosis: A Lifetime Partnership by Gilbert Barr