Two diseases, many symptoms; what to do?
My story probably doesn't differ too much from yours but maybe it does; I currently suffer from diseases (AS, dysautonomia/POTS and DDD) may. How did it start? The typical annoying back pain that got worse and worse, and then one day for no apparent reason it felt like a heart attack! After preliminary tests and laying flat whilst waiting for results, the heart attack like symptoms stopped but the pain was awful. MRIs, X-rays, stress test, and myriad of other tests showed the DDD and fusion of my SI joint (ah ha!). I should note that I had a previous injury that damaged a couple nerves which added to the mystery of some unusual symptoms (dysautonomia/POTS related) but puzzled the ER dr's...yes a trip to the neurologist. Long story short, after dx of the dysautonomia/POTS the pain was the last thing to tackle and thank goodness for a good rheumatologist! After losing 37 pounds in 4 weeks (and trust me I didn’t need to lose any weight), mobility, etc, I was dx'd with AS and placed on the biologic Remicade and methotrexate (MTX). Once completed with the remicade loading doses and adjusting the MTX, man oh man did life finally started to improve slowly but surely.
Even though I went from an extremely athletic person to pretty much light activities, I'm grateful for having a good relationship with my dr's and availability of treatments to enjoy life. What did others do before us had to be dreadful.
So enjoy the good days and make some fond memories!
I would like to hear from other people suffering, hear of the treatments and activities that have back your quality of life, or if you still struggle and need to vent or seek a listening ear in general.
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