The diagnosis didn’t come easy

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.

6 thoughts on “The diagnosis didn’t come easy

  1. My son is diagnosed AOSD since January 2017 and had flare up(pericardial effusion) in Nov 17, Feb 18 and Oct 19.
    He is under steroids predinosolone and methotroxate. We are in Hyderabad. India.
    Any suggestion to prevent flair ups?

    1. I am so sorry that your son has AOSD. I am glad that his MD has him on steroids and Methotrexate. I am not sure if his doctor has explained that there are basically 3 types of AOSD. In plain words, there is a acute flare that never returns, there is chronic remitting and there is chronic. I seem to be the 2nd type. I went for 8 years between a flare, but then I have flared twice this year. However, I have noticed with my personal experience that stress and extreme fatigue play a HUGE part in my ability to stay flare-free. I do understand that there are biologic medications that can help with sufferers that flare repeatedly. So far, I am not a candidate for these due to once my flares are under control and I do not overwhelm my body with physical or emotional stress or get the flu, I seem to be fine. This disease is so odd. Perhaps you can discuss the medication infusions, Kineret and others that seem to work well for some patients? Of course you sons doctor knows his case and can advise if he is good candidate for the biologics. I have also found that staying away from all wheat products seems to help me. For some reason, and other people have written to me as well, saying that wheat inflames their bodies which makes getting out of a flare more difficult. Maybe worth a try.
      My thoughts are with your son that he find relief soon.
      Please keep me posted.
      Sending well wishes up now.
      Claudine .

  2. Hi Kimberly, sorry that it took so long for the diagnosis. In March my niece was admitted to the ER after fighting the flu for a week. She had been tested by an urgent care a few days before and they did confirm the flu. Unfortunately she developed an uncontrollable rash, itching everywhere, and high grade fevers. Then developed fluid outside the lung, but inside the lung sack and it began collapsing her lungs. She was put on oxygen and they did a thoracentesis to drain 1,200ml of fluid from the sack so that she could breathe again. They tested her for everything from Valley Fever to Malaria and over a nine-day period, gave her antibiotics, antivirals, and antifungals; guessing at what was wrong. With steroids (prednizone), she did recover, but kept relapsing. 9 days at Banner Thunderbird, 1 day a Mayo Clinic, then 4 days again at Mayo. Finally the Mayo infectious disease doctor ruled out all foreign bodies and she was transferred to Dr. Griffin in rheumatology. I had documented six weeks of fevers, rashes, exhausting, severe back pain, swelling in wrist and fingers, and had dates for each occurrence. Dr. Griffin very quickly narrowed it down to two auto immune diseases; either AOSD or spondylosis. A couple of more tests and spondylosis was ruled out.

    It was a relief to finally know what had gone wrong with her body, but it’s been a very difficult transition to the IF diet and she still has some days of rash and exhaustion, but nothing as bad as before she started the Anakinra injections. They are extremely painful and often make her cry, but, it keeps her out of the ER and she is functional, able to work.

    We were very lucky at getting a diagnosis after only six weeks. We had a bit of a head start as at 20-years-old, her brother was diagnosed with UC and has been on a strict diet for that. Auto-immune diseases run in families. Unfortunately, her brother’s diet for UC doesn’t always line up with the IF diet for AOSD, but many items overlap.

    She was diagnosed at the age of 21, just this March passed. Her brother is now 25. Both were incredibly healthy until they developed the disease; rarely catching a cold and my niece never had the flu until this year.

    Thank you greatly for creating this blog. There is such little information on Stills that it can really leave a family feeling isolated and hopeless. If you, or anyone else in Arizona with Stills, or a family member with Stills, would like to meet up and talk shop, I’d love to meet.

    1. Thank you so much for your comment and your nieces’ progress with this complicated diagnosis. It is truly a very difficult disease to diagnose. I am so glad your niece is doing better with the injections. I have often thought of starting a meet-up group with family and people with AOSD. It could help to have others who have been there and are feeling isolated. It’s a strange thing that I can feel very well for weeks sometimes even months, but the dragon will send up a notice that it still lurks when I become over fatigued. Wishing continued progress with better health for your niece.
      Stay healthy friend.

  3. Thank you so much for this blog. I’ve had this rash, burn on my upper chest for 33 weeks now. I’ve been going to the doctor for various symptoms including laryngitis, for months. Each time having physicians say the rash on my chest was everything from sunburn, to allergies, to possibly lupus. I’ve been doing exactly what you did, researching on the internet. A few days ago my search stumbled upon the photo of your chest. I said that’s it! Now reading the other symptoms I know with no doubt. Fever. Going up to 103.3. Pain. Fatigue. The reoccurring laryngitis. Chest pain, my heart hurts like I’ve pulled a muscle. Swollen lymph nodes.
    With all you’ve been through it didn’t happen that way in vain. You’re helping us. Thank you for posting the pictures. Thank you for the lab work. That took such courage. I’ve saved them to my ipad and I will be showing my physician on Monday.
    I have an appointment on Monday with a physician who will be removing two swollen lymph nodes. If he doesn’t listen I will be driving to my family doctor, hoping he will listen. Someone is going to listen. Thank you.

    1. Dear Kimberly, thank you for taking the time to write your comment to me. I am so sorry that it is taking such a long time to get a diagnosis, but I feel you have somebody here, me, who can completely understand. Please have your MD take labs to find out if your ferritin is elevated, this is usually a pretty good indicator along with other labs that must be ruled out, leaving only a few options left, one of which could very well be AOSD. It is very common for the rash to appear, more fiercly, at a certain time, my hour was 7am and 7pm, almost exactly on the minute. Please try and get a refferal to a rheumatologist. I also had so many swollen lymph nodes, my rheumy feared that I may have cancer, so he sent me urgently to an oncologist. I had hundreds of swollen nodes, the ones under my arms were as big as avocado pits. Fortnately, high steroids (medrol for me) and high dosage of methotrexate decreased the lymph nodes very quickly. I hope you can get the medication and diagnosis to help you. Sending you positive thoughts my friend.

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