I'm applying for mystery diagnosis!

I'm sure it wont pan out but hoping it can raise some awareness and help others!

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As an infant I had unusual bowel movements but gained weight and looked healthy.

As a young child I developed painful stomach problems that at the age of 2-3 would leave me writhing in pain and continually crying. My mother was told that as an only child I was spoiled and I needed to be locked in my room until I stopped. These stomach problems happened periodically throughout my childhood and the cause was never determined despite multiple tests and doctors, by the time I was 7 I had learned breathing and distraction techniques taught in labor classes.

My mother recalls that I had colds and flus more common that some kids and my cough would last longer after the cold was resolved. About middle school it started getting much more pronounced and I was diagnosed with asthma and re-occurring bronchitis. My stomach problems continued intermittently, about once a year.

In high school I started getting sick a lot and ended up with pneumonia, mono,  sinus infections, strep throat; you name it and I had it. I also had my first bought of pleurisy but it was after a skiing accident and was attributed to that.  My first year of college I got sick a lot, I was living in dorm and I caught everything that went around. I had had a chronic cough for years but in college it began taking on a life of its own, I would cough so much throughout the night security would wake me up at night trying to see if I was ok.

The 1^st semester of my 2^nd year  I was  seeing the campus doctors, I got sick enough that the campus doctors wrote me a note to take incompletes while they were trying to figure out what was wrong.  During 2^nd semester I dropped to a minimal course load and  quit going to 2 of my 4 classes, I couldn't keep up with classes or my job as an RA; having always been an excellent student this was very hard.  I could barely make it to my 4th floor dorm room (no elevator) and the uncontrollable cough  made sitting through classes nearly impossible. I tried to bide my time until the semester was out, when I left that summer I knew I wasn’t going to be able to come back.

Once I was home I read articles on how to talk to your doctor, I made lists and went in prepared to be an educated patient. I was told that she only did 10 minute appointments and if I had more than 1-2 items to talk about I’d have to make multiple appointments. I did multiple appointments, nothing worked even when I told her I thought I had cystic fibrosis based on my reading and reminded her that I had 4 inconclusive sweats tests performed in middle school by another doctor. During the time I was under her care I was told:  to get my asthma under control, that I had to loose weight, that I was too stressed, finally at my pushing she diagnosed me with fibromyalgia for my pain and COPD for my lungs. I was referred for a cat scan for the headaches, when that came back clear I received a referral to a psychiatrist in the mail……it was the last straw. I later my medical records and found the terms ‘drug seeking’,  ‘hypochondriac’, that I and my mother had a ‘vested interest in my health but were misguided”. I had never even received a nebulizer!

At this point I was sleeping with a trash can next to my bed for the massive amount of mucous that felt as if they were suffocating me during the night. I was suffering from chronic fatigue, my entire body was sore all the time, I had migraines, anxiety, pleurisy that at times prevented me from moving, chronically swollen lymph nodes, my anxiety was out of control because I feared that I would die in my sleep before I would be believed.

I moved to a physician’s assistant that was freshly out of school and listened to me. I was disappointed when she explained that she had to treat me by a normal protocol and then take it from there. I had been through all of this before but she had listened and I really had no other choice so I agreed and was prescribed a nebulizer and a more aggressive antibiotic. Not surprisingly none of my symptoms cleared up but surprisingly for the first time someone believed there was a real problem and she promised to follow this through! She referred me to an allergist (they said I had allergies but not to an extent to explain my symptoms),  followed by an infectious disease specialist (nothing found),  followed by an internist (nothing found), followed by a pulmonologist. All of this took a very long time and I was really struggling and I had high hopes for this doctor.

The pulmonologist saw me and prescribed me a stronger oral antibiotic and did some testing,  I never felt I was getting any answers from him despite the fact I had started coughing up blood intermittently.  Much to my surprise he had been working with a pediatric pulmonologist specializing in cystic fibrosis. I was given a referral to them (and discovered they were the same office that had seen me during the sweat testing in middle school). I did not know at the time I arrived for the appointment that they were for CF I just knew they were another doctor and I really had very little hope that anything would be different this time. MUCH TO MY SURPRISE I WAS MET BY A TEAM OF SPECIALISTS AND DIAGNOSED WITH CYSTIC FIBRORIS WITHIN 10 MINUTES!! I STARTED CYRING AND WHEN THEY TRIED TO CONSOLE THEM I TOLD THEM THEY WERE TEARTS OF JOY!!! Finally I was believed and understood.