Lost on Problem, Added Another
Last updated: September 2023
This is my condensed story on how I got AS, diagnosed and live with it on an hourly basis.
I am now 63, retired and submitted for disability, refused, resubmitted and now waiting for response.
In my late 50’s I had back surgery due to bone growth and need for fusion thought to be brought on from wear and tear. One day shortly after the back surgery (2-3 months post) up for work in the morning feeling pain just about everywhere, but most of all from my right hand under my finger. I could not move and the finger brought on pain I couldn't imagine from a finger?!
I spoke to my surgeon, he didn't have a clue, nor did any of the doctors. I kept track of my symptoms, as they were getting worse, so I researched possible causes. I did hit on AS and the clues and evidence came quick. My surgeon did the HLAB27 test, after my requesting and it was positive.
Finally after 1 year I was able to see a rheumatologist. He wasn't sold on the AS, I become very upset and stated I didn't want a run around before treatment begins. He saw the intensity in my body so after a quick exam, questions and lab results my diagnosis was AS as I already presumed.
Treatment has been a bit of a nightmare, I went through the biologics and now on a different type of medication, which seems to be working, keeping my fingers crossed.
Step back to January of this year and my labs started to short circuit. Rheumatologist thought it was due to the new medication. Low and behold, I gain 50# of edema and my system was shutting down, especially my liver. I was hospitalized and fighting whatever was happening. Doctors were dumbfounded and I was blowing up like a blueberry on Willie Wonka.
After many tests, biopsies, days in acute care and a group of doctors of different disciplines, they determined I had a strange and uncommon disease.
Strange because it was manifesting in my liver and uncommon as it is Disseminated Histoplasmosis. (DH). One year of drug therapy and constant watch for reoccurance.
All that brings me to the point of the story. Please watch over yourself as your immune system is compromised and something like DH can creep in in you. One plus, I lost thirty pounds that I could stand to lose as DH causes weight loss, otherwise I would prefer not to have it.
Sometimes nothing left to do but Smile, Smile, Smile.
Do you notice worsening flares in colder weather?