Hi there....
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.

I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles.... red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.

I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.

Andi