As can be seen in my profile, I am a Type 1 diabetic with an autoimmune disease called sarcoidosis and a cardiac arrhythmia that may or may not be a result of the sarcoidosis. The diabetes alone was hard enough to deal with when I was suddenly diagnosed with it in 2008. The sarcoidosis is even more difficult to handle. The heart problems are terrifying.
Here is a link that helps explain exactly what sarcoidosis is:
Sarcoidosis
I have my doubts about this diagnosis. So I am searching for answers.
I decided to start this blog to update family and friends regarding my health, and what treatments (if any) I am doing. I also wanted to raise public awareness of this disease.
I started getting sick in April of 2012. I had a sudden drop in my weight and I was vomiting often. I kept having a feeling that something was wrong with my heart. I had 9 emergency room visits where I was diagnosed with bronchitis, GERD, severe dehydration, and depression. The antibiotics for the bronchitis didn't help, the medication for GERD made me even more sick to my stomach which led to the severe dehydration, and the depression... well, really?
I finally went to my endocrinologist when my primary care doctor wouldn't help. I thought that maybe all of it was related to my diabetes. He told me that some of the problems might be, but he did not believe so due to my recent lab work. My endocrinologist then had another doctor admit me to one of the local hospitals where I had a colonoscopy and a treadmill stress test with echo. Neither test gave any answers for the problems that I was having.
I was then sent to an oncologist at one of the larger cancer institutes in Florida. Though my labs were clear for cancer, the doctor could feel some of my lymph nodes that were enlarged. I was sent for a PET/CT scan and finally something was found that might offer answers. Every lymph node from skull to mid-thigh was enlarged. It was also noted that I had what appeared to be a fracture on the left femoral neck and some reactive spots on my femur, pelvis and one of my ribs. A bone biopsy was not possible due to the area being too small so a lymph node biopsy was performed. That biopsy came back with the suggestion of sarcoidosis. Please note "suggestion". I was told that treatment generally consisted of steroids which I needed to avoid due to my diabetes unless I felt that I could not deal with the symptoms. I was told that it would go away on its own in time.
During all of this, I was still experiencing the chest pain and feeling as though something was wrong with my heart, but the Ativan that I was given for the depression/anxiety diagnosis seemed to help.. a little.
Then it happened. I had an episode at work. I'm trained as a first responder for work so once I made sure that it wasn't a low sugar I tried checking my pulse. I couldn't even begin to count it because my heart was racing. I was taken to an emergency room close to work where, FINALLY, a cardiac arrhythmia was detected. My heart rate was almost 200 when I got there and had most likely been higher when I first started feeling it at my desk. I was having what is called Supraventricular tachycardia.
Remember that depression diagnosis? I'm willing to bet that they picked up on my accelerated heart rate but misdiagnosed it as anxiety.
The medication caused a lot of problems for me. I was in Georgia for Thanksgiving and collapsed. So it was decided to do an electrophysiological study with ablation. The first one was done on December 12, 2012. I continued to have problems so a second one was done on April 5, 2013.
I have continued to experience chest pain since the second procedure. I have a very sharp, stabbing pain that comes and goes just to left of my breastbone. Oddly, this is exactly where I felt a sharp pain during my second procedure where one of the sensors was bumping the wall of my heart. My chest pain expands to under/behind the left breast and radiates into my side below my arm going all the way down my ribs. Lately I am experiencing a "tightness" in my throat where the arteries are.
I have been back to the emergency room a couple of times now. They tell me that nothing is wrong with my heart. I did another treadmill stress test and, though I felt a little tightness in my chest, I am told that nothing is wrong with my heart. I just had an endospocy done and there is no indication that I am having any digestive problems (GERD/Heartburn/Reflux) that could be causing my pain.
So, here I am. I feel like I am back to square one. I do not know if the feeling that something is wrong with my heart is related to sarcoidosis or not. I do not know if the chest pain is even related to my heart. I feel like it is.
I suppose that you can say that I am posting here because I need an outlet. I need to put my stress and concerns someplace. I need to relate my frustrations of looking for a diagnosis. It is my intention to get an appointment with the Cleveland Clinic Sarcoidosis Center. I am hoping that they can offer me answers to all of the pain since it appears that none of the local doctors are helping.
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