My diagnosis was a slow, painful process. It is actually quite disappointing from a patients perspective. I have not written about for several reasons. One being that there is a medical ethical issue involved and the and it also brings many painful memories.
Here is how I was finally diagnosed.
I was sent home from the hospital after 10 days, as you have probably read in my blog, without a diagnosis. The following 3 months were the same if not worse than my actual hospital stay. I went to recover at my mother’s home since I was too weak to walk to the toilet by myself, or even bathe. I was down to 100 pounds from a healthy 129 Lbs. I was unable to stay alone while my husband was at work.
While at my mothers home. I would muster the strength once a day to bundle myself with quilts and to sit at the computer for 20 minutes and keep typing in the same symptoms over and over, praying for an illness would pop-up that matched my symptoms.
I know, doing something over and over and expecting change is the definition of insanity, but this one day, it worked after 12 weeks of doing this. The diagnosis of Adult Onset Stills Disease popped-up and matched my symptoms exactly.
I phoned a primary care physician. By now, I was so extremely weak, I could not hold my urine due to constant coughing and vomiting. I wore adult diaper briefs to catch my urine or huge maxi-pads to prevent urine from spilling out of me. I had lost control of my ability to hold my urine when I coughed so violently for hours on end. I was given an appointment to see him. This primary care MD was named, Dr O (full name not fully written). I brought the information that I downloaded and printed from the internet with me. I showed it to him. He said it was “impossible to have the disease” and threw my downloaded papers in the trash can next to him. I left his office extremely disappointed.
The next day, I called, I begged for a referral to a rheumatologist. This was the only type of physician I could think of that would treat Adult Onset Stills Disease. He refused to refer me, his explanation again on the phone was, “this disease is so rare, it would impossible for you to have it”.
He asked me to come to the office the next day. My mother drive me, I arrived and was lead to the exam room. We were alone. He asked me to disrobe completely so that he could perform an “inspection” of my body to see the rash. I did as I was ordered to do. He ogled by breasts and made a few compliments/comments (whichever) about them and then he wrote the referral. I cried for 2 days afterwards due to shame and anger.
I didn’t tell my husband or my family. I was so ashamed. I was so deeply ashamed that I allowed this to happen. But mostly due to his persuasive way to get me do this when I needed the referral so badly. I hate to read this now, it repulses me as I type it.
After calling around to see who was open for new referrals, I was given an appointment. I arrived at Dr Paul Howard’s Rheumatologists office, he had 3 residents with him. He asked me not to say the disease I had out loud so that his residents could try and figure out what I had
Of course, none of them had a clue, how could they? MD’s with 24 years in the hospital didn’t even know what I had.
Thank goodness for the internet and determination. I just wonder how many poor souls have suffered and are still suffering without a diagnosis. I have witnessed 1 other case in the hospital since my diagnosis and pointed it out to the hospitalist, suggesting perhaps the patient has Stills??. They sure looked like it. I was unable to work with them, due to their constant vomiting and dry heaving. I found out a few days later the patient did have Stills (AOSD), he took the credit, of course.
But, I am so happy the person did not have to suffer very long as I did.