[Managing]

I've been looking for other people like me who HAVE a rare disease, not ARE a rare disease. Even my friends treat me like I'm someone else. I'm still me. I'm just having a hard time figuring this Tarlov cyst thing out. I have five cysts, my left foot is numb and my left calf cramps after a sharp blade slides down the hamstrings like a sword slicing through a thick velvet curtain ripping downward with what feels like all my body weight. This happens especially when I stand up from sitting for just a short time. I feel a rush of hot liquid cascade down to my sacrum as the cyst fills up and pushes hard on the closest nerve causing excruciating pain that is uncontrollable until its had its crescendo.
I have seen Dr Feigenbaum and he ordered a surgery which my insurance company has denied to pay. I'm confused and tired. I'd like my active life back. I'm glad to know I'm not alone. I'll manage okay. I just never saw this coming or know what to do with it now: these cysts have been known to be part of Marfan's Syndrome, a genetic connective tissue disorder. They are not considered ALWAYS a part of cysts. Just in my case because of my other symptoms presenting as I get older...thanks for listening~Managing