Sarcoidosis is arguably one of those diseases you bring up in a conversation just to see others reactions and hear “What? How do you spell that?” Sarcoidosis has often been referred to as an inflammatory disease or a Systematic Disease and even as an Auto-Immune Disease in the medical community. Sarcoidosis is clumps of abnormal tissue (granulomas) that form in certain organs of the body. Granulomas are clusters of immune cells which most commonly affects the lungs, but is now known to affect almost any and every organ including, the liver, eyes, nose, throat, skin and heart. Currently, according to an article on Medical Talking.com, 10’s of thousands of people have the disease; you can probably double that count since this disease is so often mis-diagnosed and also include those who are non-symptomatic and don’t know they have it. Then there are those whose symptoms clear up on their own, often after a few months never to return.
I am here as a card carrying, multi-symptomatic, 10 year survivor, yes, survivor of this nasty little disease. My symptoms started a little over 10 years ago when I was doing some spring cleaning around the house. I was cleaning out the closets in the basement which were extremely dusty and which also contained paint canisters that were used years ago to paint the house. I thought it was about time that these old canisters were taken out and recycled or whatever responsible people are supposed to do with old paint containers. I was pretty new at this whole domestic thing, so I wasn’t quite sure what exactly should be done to prepare them or even who to call to have them picked up. I opened them just to make sure they were indeed old and then I promptly resealed them. I would say about 10 minutes after resealing the canisters I felt a sudden burning in my chest. I really didn’t think anything of it until about 20 minutes later when the burning turned into a sharp pain. It felt like pins and needles in my chest. Suddenly, it became harder for me to breath. My chest began to fill up and literally expand like an inflated balloon at that point the pain was unbearable. I started just grabbing at my chest and gasping for breath, but I just couldn’t get enough in. The more I tried to take in air the harder and shorter my breaths became. It was very similar to the feeling you get when you hyperventilate, just throw in excruciating pain and there you have somewhat of an idea of what I was feeling. My immediate thought was; I’m having a serious asthma attack; I was running out of air, the next breath was going to be my last and that I was going to die. My husband called for an ambulance and the only thing he could think of to say by watching me since I was unable to speak was that I was having a heart attack, so that’s what he told the 911 operator. Well, just as fast as the ambulance got there the sudden “attack” was over. I just felt really tired and wanted to sleep. I refused the ambulance ride, but they insisted on checking me out anyway and strongly suggested that I go to the hospital for tests, but I refused. I just wanted to turn over and sleep, which is what I did.
Nothing more happened again for nearly 5 years ago. Then the pain in my chest came back, but this time it was accompanied by yet another symptom, uncontrollable, painful spasms on the right side of my neck. My neck would literally get stuck in whatever position it happened to be in when the spasms occurred. Now, I knew that I had no choice but to go to the doctor. At the doctor’s office I was told it was arthritis and asthma, given a prescription for both and sent on my way. Well after more painful episodes and now rashes and boils, 10 doctors and several more powerful medications later, I gave up. I did my own research this time online by typing in my symptoms and searching “baffling diseases” yes, I typed baffling. Sometimes the illogical is the logical. I came across several options that fit what I was going through. This is what my search returned:
Lupus Malaria Non-Hodgkin’s Lymphoma Sarcoidosis
So I printed out what I found and headed back to another doctor. This time armed and ready to fight for my diagnosis or at least the attention to my situation that I deserved. At last, the last doctor I went to sent me for a CAT scan and an MRI. The MRI of my chest showed tiny little nodules so a bronchoscopy was performed on me. This was done as an outpatient procedure where they used a small flexible device with a tiny lens at the tip and inserted it down my throat. This allowed the doctor to see the inside of my affected lung. There were no cancer cells found, but there was an abnormality to the nodules. So after further tests I was finally diagnosed. I was told I had Sarcoidosis. My initial reaction was what is that and how do you spell it? It was simply described to me as an inflammation in my lungs and that’s it. I was given a high dosage anti-inflammatory and pain killers, told it would be no big deal and released.
Over the next 2 years my symptoms would get worse and seemed to spread. So my quest for a Sarcoidosis “Specialist” was on. I went through several with no success. Then about a year ago I met a doctor that actually knew a bit more about Sarcoidosis and took me off everything I was on and placed me on prednisone, which is a very strong steroidal, anti-inflammatory. This after about a month took all the pain away, but made me a bit off balanced and paranoid. So I asked to be placed on something similar, but without the steroids. The new medication worked up until about 6 months ago when it seemed my Sarcoidosis was now starting to spread even more.
Currently, I have Sarcoidosis in my joints (neck and hip) as well as my lungs. I have also started to have balance and memory lapses where I lose anywhere from minutes to hours and sometimes a whole day. I have had numerous brain MRI’s, but they show up with nothing, but a speck which doctors say is nothing to be worried about. So for now I am searching for more doctors and dealing with trying to maintain at least somewhat of a normal life. I have quit my job and started volunteering and traveling around Europe. With the pain and memory issues I’m not quite sure what type of job I will be able to get or keep once I get back, but for now I’m living my life to the fullest and riding the wave.
Sources: Walidsarhan, “Sarcoidosis Fact Sheet”. Medical Talking and
A.D.A.M., “Sarcoidosis Guide”, RightHealth