Does anyone here have eds type 3 and cvid(receive iv gamma globulin for this) I have also the following: mvp, two brain aneurysms, hypothyroidism, three joint replacements, tarlov’s cyst on sacrum, cervical, thoracic and lumber herniations and facet joint arthropathy, had a parathyroidectomy – three gland, chronic migraine, tmj, gastroparesis, depression, anxiety, add, trigeminal neuralgia and on and on.
Some day, we need to have a volunteer help us make a list of the acronyms we toss around! 😉 For newbies out there, “CVID” is common variable immunodeficiency… I think you are in good company, believe it or not, my friend! I am curious why you had your parathyroid removed, though? Interesting… I’ll have some help very soon (that should work on most of us) for gastroparesis and gut issues)… Brain aneurysms are very common in our family, too. I have theories about this (always have to have theories), but I’m curious if you have a Marfanoid Habitus, and may therefore be the MASS phenotype, and not true type 3? I think bunches of us are incorrectly called type 3 (hypermobility type). MASS phenotype folks are actually in the Marfans family, and as such, MAY want to consider the use of Losartan with their doctors. And please be sure your blood is nice and thin! 😉 Have you been checked for genetic defects of coagulation? Thromboses can weaken the vessel walls, leading to aneurysms. Are your doctors aware of the latest research in that area? Or are yours like mine? (I had a hematologist appt this week, and she was completely closed minded, unwilling to even let me finish a sentence, much less tell her the latest research. Gads.) A doctor who doesn’t require you to tap-dance around their ego is worth their weight in gold. Big hug… 🙂