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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: Sep 4, 2024 | Replies (253)

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@prairiesmoke

I had posted to angelasmom about 2 years ago concerning LV. I have had it for years, as apparently did my grandmother. Diagnosis was done 2 years ago by tissue biopsy. I had the aplagraf treatment and it partially healed the ulcer on my ankle. It took another year to heal the ulcer, which broke open again after 4 months. I am getting tired of being a guinea pig for doctors to practice on. The PA who finally figured out what was wrong with my ankle tried to get someone from Mayo to look at me, but apparently I wasn't bad enough for them to bother with, so I never got to talk to anyone who has actually dealt with a bunch of LVrs. If I sound unhappy, it is probably because the incessant pain and irritation from the ulcer gets me down after a while.

I can describe symptoms and if anyone out there has similar and has a way to help the LV, please let me know.
Symptoms start on my ankle as a small spot or sore that won't heal, but gets bigger. There is a redness around the area and tiny red spots like mini blood clots appear beneath the skin. The ulcers have been irregular in shape and often appear after a bump or bruise to the ankle, especially in warm late summer to fall weather. When the ulcer finally heals it is after the first of January and slowly granulates and fills in. It doesn't like being dry, or too wet. Medihoney keeps infections out, but the Ca alginate in the honey interacts with the exposed nerves in the ulcer and the thing burns like blazes for an hour or more after I change the dressing. (needless to say I don't change the dressing before I go to bed)

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Replies to "I had posted to angelasmom about 2 years ago concerning LV. I have had it for..."

Hi Angela\'s Mom,<br />
<br />
Mayo sent some Drs to Detroit Lakes MN a couple years ago who were<br />
associated with the LV group. My local practitioner who had done testing<br />
on me when she figured out what was wrong with my ankle, contacted the Drs.<br />
to try to get them to see me. They weren\'t interested, I am not sick<br />
enough for them to be interested in me. What they don\'t seem to realize is<br />
that they might just learn something from working with people who seem to<br />
have some immunity to the disorder. After working in genetics research for<br />
40 years I have seen first hand that it pays in the long run to look at all<br />
the data, not just the parts that agree with your preconceived theories.<br />
And yes, I do make some Drs. uncomfortable because I ask questions.<br />
<br />
Sheila<br />