Hello everyone, thanks for the add . Id like to share my story. For 9 yrs I have suffered gerd, esophgoel spasms, stinging/electric deep fleeting pains in my joints, muscle twitching, rashes (splinter hemmoraghes, red blotches), low grade fevers. Shortly after I started to get mild pancreas attacks. Fast forward to 6 months ago right side of face is drooping and I am loosing muscle on that side greatly, have chronic malabsorption (always mush or d), cannot gain weight I weigh 101 at 5'5. Only notable dryness really is if I talk a lot my voice is so scratchy that I constantly have to cough and drink water, eyes are red mid day but not scratchy.
Have worked with an RH for awhile. She has said from day one I have a AI disease but not sure which as my antibodies are always PERFECT. Only labs always off is mild lipase-pancreas.
Yesterady she said she is leaning towards this disease, maybe even bechets (cousin has this but its super rare)
Do my symptoms sound familiar. Honestly I feel like Im dying a slow death and Im going to die and they will never know why. My main issue is the stomach pains and malabsorption-I can deal with the nerve muscle stuff-all these things come in waves/flares but stomach stuff mostly constant.