There was a fine line that divided the tingling sensation I was feeling on the left side of my face and chest, and down my left arm. My chest felt heavy and my breathing was labored. I was confused and exhausted, my head hurt. I leaned against the wall for support and slid down slowly to the floor. I asked my co-worker to call 911.
I arrived in the ER by ambulance, thinking that I may have just had a stroke. Tests were ordered and completed. I was told I was fine, that there was no cardiac event or evidence of a stroke. I was relieved but confused.
What had happened? I was a certified CPR instructor for the Red Cross for several years and knew these symptoms were not normal.
I informed the ER physician, Dr Jones (names are changed), that I had just been diagnosed with narcolepsy a few weeks prior, could these symptoms be related to narcolepsy or the new medication that I was taking? I asked if he could please call the pulmonologist that diagnosed me and review my file?
I didn't know much yet about my new condition as it was new to me and considered rare. I was told no, it was not related and the phone call was not necessary. So he went on his way to file my discharge papers.
When he left the room, the nurse came in to give me morphine for the headache. As he withdrew the needle from my line, I began to feel an intense burning sensation start in my feet and move up my body. When it got to my head I felt as though it was going to explode, the pressure was intense and I was scared. I asked the nurse what was happening and he had no answers, he stared at me in disbelief as I was crying in pain and fear.
Just then Dr Jones walked back in, and with a condescending and agitated tone asked what was going on because I was fine just a few minutes ago. I was surprised by the cold reaction. I explained my reaction to the morphine and that I was scared. I asked again if it could be my narcolepsy or the new meds. Again, no. I was asked if I wanted to be admitted for observation (it was now 7pm), to which I responded "only if you feel it is necessary, I don't know what is happening". He decided he would call Dr Mason, my primary care physician to make the decision (not my specialist).
Dr Mason arrived about a half an hour later, she glided into the room and with no attempt to hide her irritation with me, stated that it had been a long day and the next time I insist on being admitted for no reason, that I could do her the favor of coming to the hospital where she was at, rather than make her commute across town. The hospital that was 15 minutes away from my office verses 5 minutes where I was at. If I had had a stroke, that extra 10 minutes could have made the difference between life and death, but I'm not a doctor. I thought to myself, are you freakin serious?
I am besides myself in disbelief. I had been Dr. Mason's patient for 20 years, never had I had a complaint about her, in fact I commonly referred friends to her. I loved having her as my doctor, what was going on? I tried to explain the days events and that I had not insisted on staying, that I was told she wanted to admit me. There was no changing her mind, She reviewed my tests confirming that nothing was wrong with me, and stated that I unnecessarily worked myself up. Then I asked her the same question that I asked Dr Jones earlier, could this be related to my narcolepsy or my new meds? I received a swift absolutely not! What about my reaction to the morphine? Again, I exaggerated my own symptoms.
I felt bewildered and confused by this turn of events. This feeling of distrust that was occuring between me and my doctors was overwhelming, nothing I had ever experienced before. The thought that crept into my mind was that they think that I'm making this up, why would I make this up? Why am I being treated so unkindly?
To make a long story short, I did my own investigating and found my symptoms could be caused from the stimulant I was placed on to treat my narcolepsy. Within a little over 24 hours from discontinuing the stimulant (with physician approval), the symptoms stopped. No more racing heart, no more anxious feeling, no more jitters, headache, weakness or tingling.
When I requested my medical records from that ER visit, I discovered I had indeed had a cardiac event while I was there, but it was signed off on and never brought to my attention. Fast forward a month later, after seeing a new sleep specialist and being referred to a cardiologist before further treatment, I was diagnosed with the heart disease cardiomyopathy. Had I remained on the stimulant, it very well could have cost me my life.
This particular experience occured in 2010, but unfortunately this happens way too often in the rare disease community. We are forced to do our own investigations because our conditions are not common and brushed off as over reactions, instead of being taken seriously.
We do not expect every doctor or healthcare professional to know everything about a rare condition, but we do deserve respect and a referral to someone who is better able to treat us if you cannot.
Let me end by saying that being a healthcare professional is NOT an easy job. I enthusiastically applaud the training, dedication, discipline and sacrifices it takes to do what you do. While I have had bumps in the road with my healthcare, I have experienced more compassionate and professional experiences than not. THANK YOU to all of the doctors, nurses, EMT's, medical assistants, office personnel, etc. for your dedication to patient care!