Scared!!!!

[wingnutt]

Does anyone else have FibroMuscular Dysplasia along with Chiari and an Arachnoid Cyst? I just read through my medical records because changing PCP's and it states I have FMD in Carotid Artery and an artery in the cervical region in back of my neck! I've researched this FMD and was very shocked as to what it is! This means that I could have a Stroke, TIA or Die!!! Very Scared and No One is doing anything for me at all! I firmly believe I do have Vascular EDS but no help from Healthcare Community! Any suggestions would be greatly Appreciated. Thanks for taking the time to read this long article!

[wingnutt]

Hi Selma! I haven't been so lucky as yet to find any Dr. that has done anything at all for me! Thank you so much for being there when I need some advice! You are always so informative and very helpful! I'll check into to that. Thanks again!

[selmaS]

  Hi....goodness it is scary what the Drs do not share with us and we find for ourselves....sad too.

U will want to locate a rheumatoid Dr that specializes in EDS and they should send u to a geneticist if Vascular EDS is suspected to make a definitive DX.

Have ne of ur Drs suggested Eagles Syndrome.....Molly posted a thread asking about that condition and it is one that affects the carotid artery.