This is going to be a bit of a long one but wondered if anyone else has had similar a similar experience and if my symptoms 'fit' because I feel like i am going in circles.
I have had digestive issues for years (including blood, mucus and undigested movements), which were first diagnosed as ibs, then a couple of years ago as mild crohns. I always have an issues with my blood work as it never seems to show inflammation, so crohns wasn't diagnosed until a colonoscopy was preformed, finding a few ulcers and some inflammation in my digestive track. I have also had ulcers in my mouth cheeks for years which were eventually put down to the fact I am often malnourished (iron and folic especially) due to crohns.
In the past year I seem to have had an onslaught of new symptoms. This includes ulcers on my tongue, down my throat, on my gums and lips. I also have inflammation in my mouth (silivary glands have been mentioned a few times), inflammation and ulcers on my privates, inflammation in my hand and feet joints, with pain in my knees, hair loss, painful and itchy eyes (i am waiting on an eye test for inflammation), worsening fatigue and constant rashes including the erythematosus macular rash on my face. I have low white blood cells, breathlessness (with occasional chest pain) and constant high blood pressure. I have also been hit with every bug and virus going in the past 6 months including lymphatic cellulitis and shingles!
I am now being told they do not believe I have crohns but in fact another autoimmune disease; lupus or bechets being the top two suspects. I am concerned I am going to struggle with a diagnosis as inflammation markers never seem to show in my blood despite being able to visibly see them all over my body (and doctors love a blood test diagnosis). I have however read this can occasionally happen with bechets.
So my first question is has anyone else experienced negative inflammation markers in their bloods?
Does this sound like it could potentially be bechets? (i know like other autoimmune diseases symptoms can vary from person to person, just curious on your opinions)
Has anyone got crohns and or lupus alongside bechets?
Has anyone been misdiagnosed with another autoimmune disease prior to a bechets diagnosis?
Thank you for your help