Livedoid vasculopathy

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

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Hi Andi and all, Just got out of thehospital where I had a cadaver graft placed over the very deep and painful ulcer on the lateral rt. ankle and around the back of my ankle where the achillies tendon is. I am finally able to put pressure on the foot to walk in a flat bottom surgical shoe. Thought I would tell you all this because, when my ulcers get extremely out of control the services of a plastic surgeon has been very valuable to me. Also just before the graft procedure, the wound center people noticed that my pulses on the right leg and foot were not good at all. I had a Angiogram with 2 stents placed in the right leg to open the arterial blood flow to that leg. Going forward I should have much better healing in that leg and foot. Just to say, have your pulses checked ,or even a doppler test done on your lower extremities just to be safe.
Would love to hear what others know about autoimmune problems and how they may be related to LV. Do any of you see a Rheumatologist? Take care, Zenk

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Hi Andi and all, Just got out of thehospital where I had a cadaver graft placed over the very deep and painful ulcer on the lateral rt. ankle and around the back of my ankle where the achillies tendon is. I am finally able to put pressure on the foot to walk in a flat bottom surgical shoe. Thought I would tell you all this because, when my ulcers get extremely out of control the services of a plastic surgeon has been very valuable to me. Also just before the graft procedure, the wound center people noticed that my pulses on the right leg and foot were not good at all. I had a Angiogram with 2 stents placed in the right leg to open the arterial blood flow to that leg. Going forward I should have much better healing in that leg and foot. Just to say, have your pulses checked ,or even a doppler test done on your lower extremities just to be safe.
Would love to hear what others know about autoimmune problems and how they may be related to LV. Do any of you see a Rheumatologist? Take care, Zenk

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I have an appointment with Rheumatology next week. I was recently tested for Lupus and the test was negative. However, I did get diagnosed with diabetes. *sigh* I am wondering if anyone else has diabetes with LV and how it has affected the healing process. I did started back on the Xarelto and it did seem to help heal the ulcers last time and I was in remission for over a year. Hoping I have that same luck now.

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Hi Andi, Glad you are continuing to look for the underlying reasons for LV. I know diabetes can impede healing due to blood vessel sclerosis. If your diabetes can be controlled, perhaps you may see an improvement in the blood flow to your ulcers and help slow development of new ulcers.
I don't know of any connection between diabetes and LV. my docs always are doing a doppler test on my feet to check for blood flow problems. Have you had a doppler?

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Yes. They have done a dopplers on my feet. I have also had ultrasound from the groin to the foot. My feet are not swelling anymore since I have been treating for the diabetes. We believe it went undiagnosed for some time. My blood sugar levels were off the charts high and we are bringing them down slowly but not without their fun side effects. I am hoping the Xarelto will help in healing with both the LV and Diabetes. I don't believe the two are linked though. I just have the luck of bad genes in the family with Diabetes. It gets frustrating when I get treated and diagnosed with something it is lifelong.... Just once it would be nice to go the doctor and it be one and done. I know we all live with this disease and it definitely has its lows. I can't believe I didn't look for a support group before now. It just feels good to be able to share experiences and lift each other up in ways that probably nobody else can.

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Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?

Any help is appreciated!
Susan

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