I was diagnosed with Behcet's last year. The most significant features has been the ulcers, red rashes in the mouth and a sore tongue and lips which did not improve with colchicine or steroids but is improving with Plaquenil. I have HLA B5.
I also get little red sores on my arms, legs, scalp and neck. I get stinging nodules on my fingers and splinter haemorrhages on my thumb nails. These symptoms are sporadic.
I had a pacemaker put in in March 2014 for an arrhythmia that caused my heart to stop. Later that year night sweats started. They are unusual because I have normal temperature, pulse and blood pressure during the sweats. Many investigations have failed to find a cause. My bloods are good and apart from getting breathless going upstairs I am healthy.
A recent Trans Oesophageal Echocardiogram revealed a mass or vegetation on one of my pacemaker leads. My blood cultures were negative.
The cardiologist and I agreed that my condition is "complex" . The rarity of the signs, symptoms and general presentation makes it very difficult for case management and treatment.
Has anyone else had heart issues like this?