It is so hard navigating all of this. It seems like each week I have a new rare disease!!! My CSF leak is cervical , and I have been to a specialist and you would know me as nancy on the CSF leak website.. I have been patched about 10 times, but the patches hold until the glue dissolves. My leak is in the nerve roots of my 3 very hyper mobile cervical joints c4-c6. I do get some symptom relief for a few months each time, and then I go back for more glue. The leak is the worst of my symptoms…the dysautonomia comes in second , the gastro issues run a close third!
I was just so curious if the low WBC was a sign of all or this stuff…with your response, I think Mast cell is something I can just table for now.
Do you have any information about diabetes Insipidus? Or heard of it in conjunction with this whole EDS picture?
I read about your study, and I do have terrible GI issues, verrrrrrry slow motility, but I live in the NW. Does the study take place in Texas?
Thank you so much for being a warrior for all of us!